Annette Nielsen and Tina Arnoldi

00:04 My name is Annette Nielsen. My age is 56 years old. It is November 7th 2012 and we're sitting here in Charleston, South Carolina.

00:16 This is Tina Arnold Eads. I'm 40 hits, November 7th 2012, and we're here in Charleston, South Carolina talking to my friend Annette.

00:29 Okay, and that we first met a little over six years ago when we were working together and one of the things I remember when I first met you is that you had you walked with a little bit of a limp. And I know you were using a cane for a while. And today is I'm sitting here talking with you you are in a motorized wheelchair and I have a lot of questions and things that we can discuss but I want you to just tell me a little bit about that Journey will basically when I met you we were both starting to work for Coastal Community Foundation. And if you remember there were two flights of stairs to get up to those offices when I went for my initial interview. It was not easy at all about 2 years before that. I have been diagnosed with a disease called transverse myelitis, which basically falls under the umbrella of multiple sclerosis. The difference is that in multiple sclerosis you have lesions in the brain and the spine with transverse myelitis only in the spine, but the symptoms are very similar.

01:29 I had started out I was running everyday was going to the gym five to six times a week and I found myself all of a sudden starting to have numbness in one foot. I was starting to limp A co-worker where I'd work before CCF mentioned G what's wrong and I hadn't even noticed that I was limping went to the doctor and said, you know, there's something not right and he looked any post any Providence is that how you know, you probably just twisted your ankle went on my Merry way and the numbness started coming up my left leg all the way and started in my right foot and started traveling up my right leg as well at that point and went back to the doctor and said this is not right something's very very wrong and he poked and prodded and he said, you know

02:17 You might have a little flu, you know, who knows maybe you're working a little too hard don't work out quite so much and then it was not only numbness now. I was stumbling now. It was falling to the ground it got to the point where my landlady actually thought I was drunk that I was getting out of the door in the morning and stumbling to my car and she was ready to call the cops because she thought I was inebriated. I finally went back to the doctor and said I don't know what's going on. But something is very wrong and he looked me straight in the eye and said to me there's nothing wrong with you. You're just being an hysterical woman.

02:58 At which point I looked at him and asked for my medical records. I went out the door and I knew that I had to find another doctor but didn't quite know what to do. Luckily. I had a friend who worked at a local hospital who could recommend somebody that I could see and that began the process of the diagnosis. It took about six months before they could finally identify what it was. They tried everything from Lyme disease. I've traveled all over the world. So they were testing me for every tropical bug you could think of when you diagnose transverse myelitis or multiple sclerosis. The process is really more of a ruling out figuring out what it is not and then you finally kind of fall into the diagnosis. Well, everything else has been ruled out. This must be what it is and they finally gave me a spinal tap and that's where they definitively diagnosed it. So by the time I came to you they had done a series of steroid.

03:58 I got a little bit more of my balance back. I was doing some physical therapy and I felt like okay I can deal with this. It's not going to be fun. But if I have to use a cane and I have a limp well, then that's how it is and there I started at CCF.

04:19 And where you are now at it again, since people can't see you here today. You're you're utilizing a wheelchair, but your limitations have been more than your legs. Can you can you talk about some of those changes? Yeah this point it's not just completely unable to use my legs at all, but the lesions have continued to develop so that now my left arm and my left hand are completely affected so that I really have very little function in that and of course the ironic thing is before all this I was left-handed. So I've had to learn to do everything with my non-dominant hand.

04:56 I want to ask a little bit about your experiences with the just the medical field and I don't want to name names but you've had you've had the good experiences with certain personalities. Well as the bad ones and again just what would have been some of the challenges is cuz you've been moving along. Well, one of the things that my dad had the saying that nothing is so bad that it isn't good for something and one of the things that I found with the medical experiences that I've had is that I found a very good physical therapist who work with me for about 3 years. And her first name is Rebecca. I really feel that she has a real gift for healing and in the process of working with her was able to regain a lot of function at least for a temporary. This disease, is like descending stairs steps you go.

05:56 Down you gain a little back but you never gain everything you had and then you plateau and then you go down again. So if you know, it's continually a loss-of-function but one of the things that she does is she teaches at the local medical school here in the physical therapy department with physical therapy students and she basically specializes in working with neurological diseases. So she is asked me and I have gone for a number of years now basically as exhibit a for transverse myelitis because this is a rather rare disease and as she is said the students if they see one or two cases in their entire careers, that'll be it. So I get to go and work with them and tell them a little bit about for example, the number one thing the medical professionals is the importance of listening to your patients. That first doctor did not listen not only did not live.

06:56 But totally discounted what I was talking about didn't really look at the symptoms didn't take them. Seriously. It wasn't until I got to the second doctor the neurologist that he was like. Oh, yeah. This is very for real and he then really listened and was able to then begin that hold diagnosis process. I think having someone listen and to finally get a name for what was happening to me was really half of the battle for me at least.

07:29 I knew for certain that it wasn't all in my head because for a while there I thought well maybe that first doctor was right. Maybe I'm making more of it than it really is even though I was finding myself on the ground half the time. So I've been lucky in terms of of a of a doctor that it's really listen to me. And with whom I've been now for 8 years as we began. I really thought it was going to be okay. You'll give me a few steroid treatments. I'll get some physical therapy and I'll Trot off on my Merry way and he just looked at me and said Annette Annette, you've got to understand this is the beginning of a long relationship and it's been 8 years now, so he's been very good. I've been very lucky in finding physical therapist to have just been wonderful and have fought with me to try to regain as much as I possibly could what that possibly could has been everything from trying to walk.

08:29 Well, I still could to trying to after I had my baclofen pump surgery in 2007 when I woke up from that surgery. I literally could not move a muscle anywhere but up from my chin below and I had to completely relearn how to sit up how to feed myself how to toilet myself all of the things that we take for granted tasks that we've basically Master by the time we're to all of a sudden I found myself a 50 year old woman not able to do and these therapist supposed to cycle in occupational therapists have been wonderful and then they've been others as I've been in the hospital as I've been in short-term rehab facilities where you find some of the Personnel like the nurse text who really feel like they have a calling to do what they do and they give so much of themselves. They really again,

09:29 Listen, they do a hundred and 10% and then you get others who you can just see they're there to take a paycheck there there to get in and out of there. They're not as gentle when they deal with people as you can tell my mouth works just fine. My legs may not then my mouth works well, but I've been roommates with elderly folks who have had Strokes who do not have the ability to speak for themselves and Who as a result cannot speak out and say hey, wait a minute. I need a little more help and that's where I found. I've been having to do some advocacy when I've been in those positions. So you had seen a wide range of people the folks who have been the real gifts have been the people who really see that medical profession as their true calling and they see it more than it's a job. They see it really as a Ministry and that comes

10:29 Through with everything they do.

10:32 Is there and I know that one of the the keys you mention is that they're the good ones are the ones who were listening to you. Is it even with the best doctors? Is there something or maybe you feel that you're they may just not get or they're still maybe not hearing you. So what you know, since your situation isn't so common and it's not out of them not caring but maybe just not understanding where you are. I don't think it's so much then not understanding but really them being frustrated of not being able to figure out exactly what's going on. Normally transverse. Myelitis is a one-and-done thing. It's like chicken pox. You have a huge immune system reaction when the lesions form in the spine. It does its damage and then it's one it's done.

11:25 And then you live with that level of damage whatever it is 30% of people basically recover completely 30% are left completely dependent needing even not now iron lung type-r respiratory health and 30% are like myself where you've lost somewhere in between where my doctor and both both my doctor and I've been frustrated is that I'm presenting a secondary progressive MS if it continues to get worse, but we can't figure out why because there is no lesion in the brain and until I show a lesion in the brain, I can't get the full Ms. Diagnosis and the drugs that are available and the treatments that are available will only be covered by insurance if I have the full Ms. Diagnosis. If I do it without the diagnosis, it would be out of pocket. There's no guarantee that it would be effective and we're talkin.

12:25 12 to $1,500 a month for just the drugs.

12:29 Next. That's a good segue cuz you know, we talked about issues with insurance and prescriptions and wheelchair in where are some areas where there's some serious Improvement that needs that's maybe I should say needs to be made and is also doable in terms of you being able to access the resources that you need and I'm getting a wheelchair getting the prescription that you need or there's some barriers you see and have ideas and how to overcome those. Well the first thing I think when I when it was obvious that this was not getting better and it was obvious that I was not going to be able to continue to do the job at CCF for which I was hired as you remember. I was a program and Grant specialist and would go out on site visits all over, you know, eight counties and a lot of these were rural counties a lot of these required going up stairs totally inaccessible to someone using a row.

13:29 Later, and especially inaccessible to someone using a wheelchair it became very clear that I was not going to be able to continue to do that and between that and the continuing weakness, it was basically decided by my doctor that I should apply for disability. I was very lucky in that process Because by the time I started the application for disability, I probably had two and a half years of solid medical records that I could send to the board that was making that determination. I've heard people who have been refused to three four times and eventually had to go to court to try to get approval. I was very lucky and that I was approved within 6 months first time out. But as one person told me on the board, I had all my documentation, but the frustrating part is that all was after they have

14:28 Determined that I was disabled then it was a two-year waiting. Before. I was eligible for Medicare insurance to cover me. So I had to pay out-of-pocket private insurance in the high-risk pool. I no longer was covered by the insurance at work cuz I was no longer working but I did would not qualify for the Medicare insurance until 24 months after the date of my diagnosis. Basically what happened was that I had to use up all of my savings in order to pay it was $1,000 a month to cover me. I didn't dare not have the insurance because of how the disease has been progressing and the kind of treatment that I need that I think could very easily be taking care of that that could be quickly remedied if indeed a person has gone through the extensive process need

15:28 To certify them as disabled then surely by that point. It should be determined that they're not committing Medicare fraud if they would go on Medicare insurance right away. I would be a little bit more self-sufficient financially if indeed I could have been on Medicare but rather I ended up spending what was supposed to be a down payment on a house. I had hoped to buy my own home that $24,000 was used to pay for my insurance. So those two years.

16:04 What about moving moving past the point of dealing with insurance companies in different medical facilities? What about overall accessibility? Especially what you're seeing here in Charleston South Carolina or where you know somewhere you specific you live some of the biggest areas where they may need to be improvements in terms of ramps in doors that are wide enough and I can actually be opened with talk about different areas in here in Charlton. We receive the handicap. I remember one place that handicap button that you push was nowhere near the doorway at a time. You would get it push it open. There's no way you'd get over there in a wheelchair right where it where do we need to what do we need to work on here? So things are accessible. I think since the passage of the American with Disabilities Act the Ada, there's been a lot of improvements but one of the things that I've noticed is that

17:01 Sometimes the design does not seem to be done by someone who actually was disabled or consulted with folks with disabilities. So for example, when I was at st. Francis Hospital here in Charleston doing physical therapy. We were trying to practice learning to use public restrooms so that I could do that independently to try to transfer to the toilet in to do that. So we would go to the public restroom in the hospital and it was close but no cigar in that the door opened into the stall. Which means yes, I could get in the stall but there was no way to close the door behind me. There wasn't enough room in another bathroom in the same hospital. They had grab bars so that you could you no help steady yourself, but the toilet was on one wall and the grab bar was on the opposite wall. So it was nowhere near

18:01 It's things like that. I don't know if you've ever noticed if you go into a public restroom, probably anywhere in the United States, where do they situate the wheelchair accessible stall? It's usually at the very end, which is totally

18:21 It doesn't make a whole lot of sense because it takes so much effort to get all the way down there. And if there were a bunch of people standing in line, which I've seen happen and they're all waiting to get to a restroom first. They're blocking your way. If not, somebody is using it because they have to go so badly, you know, and then they come out and of course, they're all apologetic and embarrassed. But one thing I do have to say is is a caveat.

18:49 Having experienced what I've experienced so far. I've seen both the best and the worst in people and ultimately I release the best comes through more often than not when there's been a door that I cannot open people have always been very willing to open it and hold it for me when there's been a difficulty and I've gotten stuck in the chair there have been people who've been there willing to help me there been very few times where I've had people who just sort of stared and walked by sometimes I've had to ask you to excuse me. Do you mind when I go to the grocery store inevitably what I want to get it's on the top shelf, okay, but people as they come by if they're there and I said, excuse me. Do you mind reaching that? You know, whatever it is up on the top shelf more often than not they're very happy and very willing to help and that's been really good.

19:49 And how in general I have has do you feel that people treat you differently than they did before you were in the situation you're in now and is it and in some ways has it been defined that people are treating you better or they're treating you worse or differently or what is that? What is that look like now, they're definitely treating me differently and it runs a whole gamut it goes from the people who sit there and stare.

20:16 They don't want to meet your eye but they stare and they said they're trying to puzzle it out to I can't tell you the number of times. I've been in a public place and someone has walked up to me and said so what's wrong with you as a friend. I always look at them and say well there's really nothing wrong with me. But if you want to know why it is I'm sitting in the chair. I'll be happy to tell you there are also just the other day. I was going to an office and there was a gentleman standing outside smoking a cigarette. And as I was Rollin by he's a boy. It must be a real bummer to have people look down on you all the time. It's like okay and then there are other people who for example in the accessible parking spaces. Well, I was only parking there for 5 minutes, you know, even though they're very very able-bodied. I think the the worst that I've ever seen was a woman who was dry.

21:16 I need a convertible. She she was wearing workout clothes. She parked in the wheelchair accessible parking space. She literally just open the car door. She literally jumped over the car door and she ran into the grocery store and I was continuing to roll and as I rolled by her car, she had a vanity license plate that read I am fit.

21:41 It was like really so when she came out I just looked at her. I was only in there for 10 minutes.

21:50 But you didn't see any problem with that see you see that the other end of the spectrum are the people who've been very kind who been very helpful, but there's sort of a the middle group.

22:05 And I don't quite know how to describe it. As you know, I am an ordained Pastor as well as been doing the the work with the with the nonprofit area.

22:18 And I'm used to having people talk to me open up to me talk about their problems talk about their concerns their troubles. But ever since I've been in this chair, it's been amazing how people have just kind of glum themselves to my side and just opened up. I mean about all sorts of things have nothing to do with the wheelchair but they just sort of start talking about their relationships. They start talking about their physical pains and they always sort of qualified, but of course, it's nowhere near as bad as you and what I always say to them is like no we all have our things that we need to deal with. We're all struggling in some way. Some of ours is more physically obvious and some of the more internal and emotional but I don't think anybody's load is any heavier than anyone's else. It's just different.

23:15 It's been amazing where people have ever said just opened up. I think there's almost dumb.

23:22 And if sumption perhaps that

23:26 Because I'm sitting in this chair. I know what it's like to struggle that I know what it's like to have to deal with difficulty and because of that maybe I would understand maybe that I would have a little more empathy that we're kind of comrades-in-arms in in that struggle.

23:50 And it's been that it's really amaze me in a way and yet another way. I've really come to welcome that role if my sitting there.

24:02 In this chair helps another person feel like it's okay to talk a little bit. It's okay to be vulnerable. It's okay to share their struggles and I consider that a privilege.

24:17 And I want to switch gears again a little bit is you've mentioned your back of your experience as a pastor and how your dad said something about situations are good for something and of course to I know you're familiar with the scripture that talks about all things work together. And and I know sometimes I think it's a valuable verse and I think it's also thrown out flippantly. So I'm curious, you know, when you hear versus like that or there's a reason or this kind of and I'm sure some Planet doesn't give you any more than you can handle another one A different platitudes and wondering how what that's done to your face. But you know when this first started happening if it was the do, you know God why me or if there was the anger acceptance and just kind of what your faith Journey has been for the last six eight years. It's been a bumpy ride. I'll have to be really really very honest about that. I've never gone through the winey phase because they

25:17 Glee I feel well, why not me why not me and why somebody else as I said, I really feel that all of us have struggles that we deal with and that, you know, I said some are more obvious to the eye than others summer more internal. I think the the one platitude that's been thrown out at me. Oh, you're so strong dude, and you know God doesn't give us any more than we can handle at which point I really want to shoot back. I wish God didn't quite feel quite so highly about me and my ability to handle things. There are times when I really have a little heart-to-heart with God and sort of saying,

26:06 You know we leave this.

26:09 Furthers the process of the Kosmos how you know, I don't blame God for giving this to me. I mean, that's not I'm believe that God works that way and I do believe that God walks next to us in and partners with us and is with us in the struggles. There are there are times when I have my meltdown moments where it just frustrates me. When what I used to be able to do so easily like right out something on a piece of paper and now it looks like I'm writing Japanese as opposed to English when it takes me literally half an hour to try to dress myself when it takes an hour and a half to make a sandwich for lunch those kind of struggles that cat once in a while. I have my meltdown moments and as I like to say I

27:06 I have a little cry. I pull up my big girl panties and I go on from there, you know, if I didn't have the meltdowns, I think I would be really dishonest.

27:18 Where my face fits into all of that I think.

27:23 What I've learned is that we're defined not by what we do but by Who We Are

27:32 That that is at Essence to God creative created us to be that that's what we're here to really discover.

27:41 I really believe that God is in the midst of this not as the actor and pulling the strings like the Puppeteer but basically being there as the companion as the person who walks next to.

27:58 As the strength

28:00 There are times when my I'm more in tune with that then at other times.

28:07 It hasn't I would say that it probably has deep into my face and ways that I wouldn't have anticipated.

28:17 I understand much more what John of the Cross talked in terms of The Dark Night of the Soul.

28:24 There's a great story of the Teresa of Avila. Who is the saint in Spain who was called in a dream. She heard the voice of God saying I want you to go and go to this other Monastery. It was a stormy night, but she evade The Voice she got on a mule started going down this mud strewn Road, and there was a clap of thunder and a bolt of lightning the mule spooked and threw her into a muddy ditch at which point Teresa's said to have gotten up looked at the heavens and said God it's this is the way you treat your friends. No wonder you have so few of them.

29:04 Once in awhile, that's that's the struggle.

29:09 We have and that's understandable. If you if you didn't have that I would know you were lying, right? You can't just say this is okay, and I'm fine with it. So I didn't think you need to do those battles it didn't you mention talking about you know, who you are vs. What you do? And I think that's something that so many people are guilty of few know if you're at a cocktail party at the first thing that they want your job title of your company and I'm curious to about that process that really sure you are working part-time now, but your circumstances have changed so much. So, how do you when you talk about who you are? And how is that change? How do you how would you define yourself? If someone said who you are? And I know it's a tough when I'm kind of thrown at you but instead of what you what you do. It's what you know, who are you? I guess I would basically say that I'm a person who is constantly learning.

30:05 Then I'm a person who is trying to deal as positively as as I can with the hand that I've been dealt.

30:14 To try to

30:17 Rather than focusing on what I cannot do.

30:21 I try to focus on what I'm still able to do for myself.

30:30 And at the same time

30:33 When I come across those people who also look like, you know who want to talk to make myself available. I basically to find myself as a person who is trying to become more human if that makes any sense to understand the commonality that we all have to recognize that. We are all in some way or other disabled. We have our struggles. We have our places where we hurt where we are not able to do as we had some one day. Maybe you had wished we could

31:13 So what is it? What are some of the things that you're grateful for now then and I'm talking the little things which you know, maybe it's the breeze blowing or the phone call from a friend or is it will think that maybe you didn't notice so much before that you're realizing out how valuable they are to you. I think the first thing that I become very aware of than very grateful for our friends friends like you

31:42 Okay.

31:45 You have been there for me.

31:52 At times

31:55 When no one else came to visit you and Richard particularly good.

32:01 And there were times when I was hospitalized.

32:05 And I would feel so lonely.

32:09 And people tend to avoid those places because it always one person said it's so depressing and it can be and I understand that but the people who do come to say as you did I'm there for you also.

32:27 You've been there pushing me a little bit. I think you kept on my case about taking this part-time chop more than once and I kept trying to say. Oh no. No. No, I don't think I can do that and yet you had faith enough that yeah, maybe I could and it's that type of thing the friends most of all family the support of family as well. As you know, my family is 1800 miles away. So this has been a struggle but they've really tried to be there for me in any way they can

33:03 The little things

33:06 I particularly have become very appreciative of being able to go outdoors and just enjoy the outdoors. There's so much for example, the beach isn't accessible to me anymore. But one of the things that I did because I got here early.

33:22 Is I went over to the Fort Sumter monument and went out to the very end of the dock and just looked out over the water and watch the ships go by and watch the Pelican Drop into the water as he tried to catch something. There was a breeze the brain came down a little bit at the same time, but it was just for me. So refreshing to get out there to just enjoy the day to enjoy that being outdoors and then there's little things like still being able to enjoy the hot cup of coffee in the morning and wake up slowly very important even though I can no longer do it by myself. As you know, I have helped comes in for an hour in the morning and an hour at night to help me get out of bed and get me ready for the day. So we'll have our first cup of coffee together. And in fact, it's a very companionable time something that I really have come to Treasure.

34:24 Sure.

34:26 You mentioned before

34:30 Yes.

34:34 Once people

34:37 If there was ever a time in you know, if that experience taught you something or there was any reflection about how people started treating you differently.

34:48 Well, one of the things that I guess was to my advantage and being in Special Ed. I have a younger sister who is developmentally disabled and she was always in special ed classes. And so from the time I was in junior high up. I was always volunteering in the classrooms and there would be children as both intellectual disabilities and also physical disabilities and then going into the profession and teaching for a while and have to freshen one of the things set.

35:19 You learn is that each of these people are people they have gifts. They have things to offer that they are not the sum total. They're not defined by their disability they function and they have much to offer despite and sometimes because of it.

35:38 Once I went out of teaching special ed went into the ministry. It's been interesting because every single church that I've worked with I have always had to introduce the idea of making the buildings and the bathrooms accessible in those churches. I was not disabled but it became very clear to me that that was needed and to a church. It was always well, I don't know why there's nobody in a wheelchair here and if they're my response would always be there might be a reason is because they can't get in and it was I always tried to do the Field of Dreams Vision. If you build it, they will come and indeed that's been the case and now there's a church here in Charleston. I came to Charleston to serve a local church. That's what got me down here initially and one of the projects that we did was making the building in the bathrooms accessible and now I'm able to get into the building.

36:38 Most of the work that I did earlier but had no idea that I would personally needed.

36:45 And that kind of building on that is near as we start to wrap up with people are listening to this and they're saying hey, you know, I don't think I've been getting this until now I'm starting to realize the challenges that people with disabilities have and you know, I want to help or what can I do? I know one thing you've done informally, you've been an advert, you know a consultant for accessible facilities and the crazy lady in the wheelchair well, and also those that I know you've mentioned advocating helping people going through the you know, the mountain of paperwork that they need to get through to somebody who's not entirely aware and it's just really hearing some new things. Is there anything you can tell people that this is what you can do to help or whether it's just your neighbor or your friend or organizations or just holding the door open for somebody when they're behind you with with something that that people can can do.

37:39 I think the first thing that people can do is to acknowledge that there are people with disabilities in their missed for years and years and years when a person had a disability they were kind of shut away email and people like me would be the shut-ins because you would never go out but now with Ada and accessibility and all were able to get out and about and have lots to offer I would really encourage people to open their open their minds to the fact that the disabled are there and to make space for them in their workplaces in their clubs in their churches on to take a good long hard. Look just the physical facilities. What would if you were in a wheelchair in fact rent a wheelchair and get in it and have someone push you around and now try to get into your building into your bathroom into your offices. Is it easy? Is it hard? Can you open the door?

38:39 One of those weighted doors were you need to pay back? Practically the Arnold Schwarzenegger that kind of thing. That's the first thing the second thing is to be aware of the disabilities council's in their towns. There are all always things that can be done in terms of someone like me who can't write very well because I only have one hand is can they go in volunteer to help fill out paperwork? Is there anything else that we didn't get to that you do? You want to you want to say or put out there before we finished?

39:15 I just want to thank you, and I want to thank

39:20 The people who have been so instrumental in helping me to make this transition cuz it's been a bumpy ride, and if we get out of this trailer, it's going to be another bumpy ride, but I just want to thank folk for letting me be part of their lives and for letting me be part of there's always thank you for being so open with your story. I think it's big something a lot of people need to hear. Thanks.