Losing *everyone* in my life because of disability

[Durzo]

Hi all; it's really great to find a place where I can (hopefully) talk to someone who understands what it's like to live with a disability. I'm really hoping someone can answer this question for me (to whatever extent you can) because in my 12 1/2 years of disability, it's become more important and urgent than ever before:

I've heard that one of the #1 problems with living with a disability is isolation. I'm seriously afraid, and with good reason, that I'm doomed to inevitably live out the rest of my days with no friends, no relationships, not even family: just finish what's left of a miserable and lonely existence until I die.

My question is: is this inevitable? Does this happen to the vast majority of disabled people; is it even heard of to live out a fulfilling life like this with significant human relationships? And if I've already lost all but one person in my life (my mother, now in her late 60's) at the age of 29, is it even possible to make new friends at this age that will turn into lasting life-long friendships? I know the last question seems like something that everyone should know by the age of 29, but a lifetime of lacking social opportunities due to disability and high-functioning autism has left me pretty ignorant on the subject. I'm pretty decently socially-skilled now, despite the autism, from a lot of practice.

I've had severe chronic pain since I injured my neck and back when I was 16, with two degenerated disks in my neck, one in my mid-back, and a subluxed C4 vertebrae in the neck. Over the last few years I've lost all 4 of my long-time childhood friends because they got fed up with it, inevitably pushing me away and rationalizing more and more excuses to get mad at me and blame me for my condition, and my failure to accomplish something more than being on disability.
I've tried so hard so many times, but the pain was always too much to endure going to school in pursuit of my dream: earning a Masters (& eventually PhD) in bio-chemistry and going into medical research. I have more than enough aptitude for if and learned plenty at home, but every time I tried attending school - going to classes for hours and busing there and back every day - trying to learn & work in that much pain became unendurable and inevitably led to total mental breakdown. Long-term pain, especially at such major levels, really inhibits mental function too.

It's incredible how ignorant people are about it; how much they'll blame you for being this way, making assertions like I'm just not motivated enough to get better, I'm being a wuss and not really in that much pain, that pain is just an excuse to take drugs (painkillers) and get out of helping with housework, that it's always just an "excuse" for not trying. They see me push myself beyond limits that most people couldn't even endure just to do what would seem like a modest effort to them, and so constantly accused me of barely trying at all because of how "little" I accomplished. I can't tell you how infuriating that can be; to know that working at a "minor" task like 2 hours of walking through agony they can't imagine, always gets me nothing but "you're not even trying that hard; that was barely anything".

The last friend that ditched me forever (albeit he turned into a complete lunatic from hallucinogenic drug abuse anyway) constantly berated and screamed at me for not making the effort to actually go out and make friends, but in reality the physical pain of just trying to keep up with daily household chores (dishes, laundry etc) already put me through so much agony that I couldn't even walk during the evening, much less go out and socialize.

The worst part about people's ignorance, though, is that nobody talks to you about your barriers or tries to understand: instead they just constantly tell me what I'm thinking, how I'm thinking, what I really need to do, and how I'm just convincing myself that I can't.

So now I have no friends, my younger brother has totally disowned me and blames me for being this way, my dad's the same way, and my sister is about to do the same (if she hasn't fully already) because I re-injured my neck about 2 months ago, worsening to such constant unbearable pain that I can barely walk and I can't get more than a few hours sleep at night because of muscle spasms.

Since then I've turned into a person I completely hate: having such a short fuse and blowing up at people over the slightest provocation - despite trying very hard not to - from so much built up stress, pain, and anger at having my life stolen away from me, unable to find a single doctor that takes me seriously, being constantly impoverished, and being abandoned by everybody who ever meant anything to me. I hate myself so much for blowing up at my mom all the time over stupid little things when she does so much to help me; I'm afraid I'll make her cancer come back with all the stress from that and worrying about me, and I wouldn't blame her if she abandoned me too; which may eventually happen.

It seems like the only reason I have left to not end it all is the pain I would cause to my family, but I'm even sure if I"ll cause them more pain in the long-run by staying alive. The medical system makes suicide out to be always a product of mental illness, but I'm not even majorly depressed all the time. But I've come dangerously close to doing it a few times these last few months not because of depression (mainly), but because the pain is simply more than any human can endure.
It's like if you showed someone euthanize a friend in a movie because they were crippled from MS, that would be highly controversial. But when you see a movie where one of the protagonists' friends is captured by a band of aliens/bandits/monsters whatever - who are going to torture them to death for days on end - they shoot their comrade out of mercy, and there's nothing controversial about it. The later is more true to my case.

I actually have major hope for the first time in 12 years; a neurosurgeon has figured out exactly what's wrong with me and has me on the waiting list to surgically fix my neck, which could quite possibly fix it enough to have major pain-control and pursue careers and everything. But I've already lost everybody at this point, I'm afraid I'll lose my mom because I can't stop blowing up now, and even with a fix on the horizon I'm not 100% sure I can hold out long enough to not kill myself when I don't even have one person in my life; not even to talk to about this (rather not any more), but just to hang out with and have human contact. It ends up being more painful than you might even imagine: having every meaningful friend and family member hate you and abandon you. It's also really upsetting to be almost hitting 30 now and having missed out on all my youth years, all the experiences everybody else gets to have, even still being a virgin and never even having been kissed.

All this is mostly why I became an atheist in fact....

[Ragman]

Hi, Durzo,

Being disabled is something that changes everything - I been this way for twenty years, due to a malicious action of someone else - but that is history. Yes, being disabled can isolate you, make you shunned by everyone - if you let it.  I am gregarious by nature, friendly and easy going - The medics tell me I should be depressed, but that is not me - I am embarrassing to encounter, most of the time, as I am big fat and ugly, shake a lot, and stuck in a very expensive tricked out wheelchair.  A prime candidate for the disabled isolation, but I am not interested in being isolated  - I let go of the anger - it does not help, let go of the need to hurt people, because I hurt, let go of every reason I would not want to meet me.  It worked - I still hurt often - my body tries to tear itself apart with muscular spasm - it makes me scream sometimes, and I have been this way for twenty years - Last week my thumb dislocated itself again - hurts like heck, but that, to me, is no reason to fall into the anger that I used to, because I found that it wasn't the wheelchair, or the embarrassing disability that turned people away – it was the seven hundred and fifty pound mass of aggression and wheelchair that turned people away.  It is not my fault I am disabled, it is not anyone I meets' fault either - it is the fault of a person who hated me long ago, who committed suicide a few years ago, so the primary cause of my condition is gone. Nothing to be aggressive with - that pissed me off for a while, but not any more - I like people, people generally like me, because I make sure they see me, not the wheelchair - I present myself as the object to be communicated with, and, surprisingly, it works.

Some people are embarrassed about the lump that is me, but screw them - they have the problem, not me. My family has forgiven me the aggression that caused them so much problem - they understood the impact of being a cripple - and realised that I had more on my mind than being nice, at that time. But now, twenty years later, I don't have that on my mind – haven't had for fourteen years really. Life has responded to my changed attitude, and I now am not angry with the people who don't understand what it is like to be me. Just accepting that change, made my life so much better.  Pain is something that gets my attention, but it is personal pain – not given to me by any person present – so I cannot blame anyone for it. This means the people around me did not cause the pain, it is personal, my muscles just tried to pull my foot off, or dislocated a digit. I understand pain, I have it all of the time, and cannot take anything at all to make it better - the encephalopathy caused by any drug makes it unbearable - the only thing I have is my ability to think - remove that and I no longer exist. This makes me used to pains, not tolerant of them, used to them.

I stopped being depressed when the realisation of my behaviour hit me - I am not vengeful - it is pointless. I don't even hate God, it happened, it is history, and now I get on with living.

I can stand up, but can't do anything when stood, I can walk two steps without a frame, or ten with one. Can't use crutches, and spasm, jerk and twitch like crazy when doing anything with any muscles. Without the software, I would not be writing this.

If I gave advice, I would suggest that you stop the anger, by what ever means, stop the self loathing, by what ever means - we are all on this world, no matter what hand we are dealt - it sucks, yes, but that is only part of you, part of me - the other part is the one that people relate to.
But i don't usually give advice - who the hell am I to give advice to anyone? Sixty years old, and stuck in a wheelchair.

[Anne1]

I understand that there is no magic word that I can say that makes you feel better – I just hope that you can find a better place in your life. I am very sorry that this has cost you so much so far, that just makes my situation feel …insignificant almost. All my love and prayers.

[davidj]

Hi, Durzo, Sorry you are going through so much pain and social hurt. Please get involved with church groups, and disability organizations in your state, even your country. When I moved from New Jersey to California, beside going to my job with the fed. government, married, found myself still slow in meeting people, especially with disabilities, so I joined five groups, including my church, and luckily am happy to know them for the last 20 years. A good listener can also be a great leader when the time is right so get out there and live.

[1mandy]

HI! Durzo, I will be up front. I am in very bad pain also.It's hard to even get out of a chair. Some days even get out of bed. I am 41 now. I have a very bad disease I was born with. Dermatomyositis or called JDM. All I head all my life from Doc's it was in my head the pain. Or growing pains. I have to use oxygen most days. In and out of my wheelchair. It was less then two years ago. That I even new what the hell was wrong with me. I was put in a nursing home on my 39 birth day. With just the elderly to talk to. They sure did tech me one thing. Don't look back. Just forward and let the anger go. It wont fix a thing. It will  just make you bitter and sad. I have lost a lot of friends. Or I should say I thought they were. Lost a marriage. But still I haven't lost my fight to live. I get low but just try to make the best of the day I was given. I have turned to drawing pictures. Just something. So at least I try to keep my mind active. I wish you the best. Wish I could take your pain away along with mine. It's sounds like you have a Doc now at least listing to you. Be thankful for that. I don't really know what to say. But please try to go on the best way you can. You have a new friend me. If that helps. !mandy

[lynn]

Girl I could have written your letter myself........
I have been disabled for 41 yrs. Just remember that you are not alone.
I hope to see you in chatroom-there are friends to be made here........support too.
  -lynn

[Cooper]

One thing I would seriously recommend, if you can find one your insurance will accept, or one that will do it pro-bono: talking to a therapist.  It's nothing to be ashamed about--I'm in my third year of seeing one.

Also explain to everyone still in your life that you recognize you aren't handling your pain well, apologize for it, and then try and fix it. Try meditation--you can do that lying down, it doesn't have to be in that position we automatically think of when we think meditation--breathing techniques, ect, ect.

I suffer from depression as well, which is a comorbid disorder with most disabilities. I recently had to stop taking my medication because it wouldn't let me go into REM sleep, and I was sleeping all the time because, when I was sleeping, I wasn't actually getting any sleep. I've recently had to go to both my sister and grandma, who I was grumpy with recently, and explain what was going on and what I intended to do about it (that I already have an appointment to see a psychiatrist to get some mood meds that don't screw me over.)

Also, have you looked into neck braces? I'm a bit proud myself, so I didn't like wearing braces around my leg--one of my disabilities--but eventually I realized it was better than taking painkillers.

All thoughts to consider. Good luck and stay strong!

[Anne1]

What Cooper said really does help, you cannot vent to family and friends a lot of the time – either they cannot understand what it is you trying to say, you come across as though you are complaining or it just feels as though something is amiss. However, a therapist allows you to get those thoughts off your chest, which can be very therapeutic.

[Buddy]

Durzo, I first read your post months ago. I apologize for not responding sooner. While I certainly empathize, I felt ill-equipped to make a sensible reply. But I forgot that empathy is what I needed to share with you.
I agree that a therapist is a great idea. I've encountered some very nice people through this chatroom, and posted essays on this board when I needed to vent. It doesn't take away my problems, but a lot of times, it helps me not feel alone.
I wish you the absolute best.

[disabilityHELPER]

I have been living with a physical disability for 15 years. Recently I have been diagnosed with another disability that now has created isolation for me, the best way I cope is by locating forums now and communicating this way.

I can honestly say my family does not visit or call, only when they feel like dealing with me as a "token" or they can possibly obtain something from me.

Everyday that passes, I feel happy that I have the internet, but alone as I have limited interaction on a social level.

A couple of weeks ago I reached out and joined a social group for people with disabilities, so far so good, it seems to show some promise.

Have you tried to join any social groups? Are there any in your province or county?

[Cactus Jack]

I hear ya.  I'm 45 and been dealing with my impairments for a long time.  People cannot see them readily, therefore they do not exist.  And then I'm either a liar, a faker or mentally retarded (when they find out about them).  Happens everywhere- work, school, church, etc. ad nauseum.

One church I went to and gave money to even said that I had no right to have a girlfriend because of my impairments.  If I asked any women out I was chastised for it.  That won't float my boat.  Suffice it to say I no longer go there.