This is part of the Brejcha Personal and Disability Resource Site, and after reading this page you can Click here for a Menu . But for now, Welcome to my:
© F. Alexander Brejcha
"What if I was diagnosed with M.S... or lost my hearing or sight... or what if I was suddenly paralyzed in an accident? How do I deal with it? How do I go on living with it?"
Will you be happy? Or will you keep running into walls?
The creatures prancing above may look different than my cat, but my various feline companions have helped me deal with my ongoing problems. I am accepted, and loved -- but still not spared some earnest derision if it's called for. That's useful to keep me on my toes... er, rims. And there's something about the confident way cats keep above indignities that I respect. There is also something soothing about them that helps keep me calm.
But what if you're not a cat (or dog) person? And, to be honest, even if you are: it's not enough. So, that's why I put together this page (helped by the above little animated GIFs courtesy of Barry's Clip Art Server.)
I am going to be adding to this page as I get time -- and I may seem to ramble on with some obvious stuff here and there, but those things may not be obvious to others, and perhaps you may need a reminder. I will also be dealing with another important question here: How do I live with a disablity?
But the first challenge is to face a new way of living as an "impaired" person. That's the way you will be looking at yourself at first, and it's the way most of the world will try to treat you. The most important thing is to change that first viewpoint, because until you do, the world will never see you in any other way. I'm sure you have all heard the apocryphal story about a person with a disability who goes out to dinner with their spouse/significant other/friends, only to hear "what would he/she like to eat". I actually never suffered that indignation because no matter how depressed I got (and I got plenty depressed), I was on guard for that (although one time when I went out with a blind friend for a business dinner, a stressed server looked helplessly at my friend's guide dog for a moment as if to ask her where we wanted to sit). But whenever I go out to dinner, I always make immediate contact and rapport with the host/hostess and server to let them know to deal with 'me'. Never give anyone a chance to 'pity' you and become condescending, but let them know they are dealing with an equal. There's no need to be obnoxious, a simple smile and greeting with direct eye contact is usually enough, or in the case of taking someone out, be the first to say "I have reservations for two for...". If you're the one being taken out -- especially if you're a woman, it's harder, but again, the greeting and eye contact help because it sets up a human-to-human contact.
Enough with that rambling!
The first thing to do is to accept your own disability and learn to deal with it so you can go on with your life, whether that means dealing with a physical disability or a sensory one. Because until you accept yourself, others will not!
Each disability brings its own unique burdens and life-changes, but they all share certain key components which can be emotionally devastating -- primarily a numbing sense that one has lost control of one's life. I do hope that what I will discuss will strike a chord with any person with a disability, but forgive me if I miss some points. I am familiar with a variety of disabilities from my advocacy work and friends with varying disabilities, but I'll admit that I can only speak definitively about what M.S. has done to my particular life - and I can't even speak for everyone with M.S., because each case is unique. Some people have major problems immediately, others begin with minor problems that continually increase, and yet others have some symptoms that either ease up or never get any worse. That unpredictability, and the common difficulty of making an immediate diagnosis, are among the worst aspects of M.S. because unlike a spinal injury or loss of vision or hearing, there is no set 'disability event' with a defined parameter.
I don't wish to start an argument about "my disability is worse than yours", but I remember having strong feelings to that extent some years ago when I was not dealing too well with my own rapidly progressing chronic-progressive M.S. (let's just say I was a self-pitying piece of... er, excrement) -- and I want to throw in here that while I still have some progression going on, it has now slowed down, and is partly my own fault for not keeping up properly with exercise. At that time I was getting some physical therapy at Bryn Mawr Rehab, and I overheard a spinal cord injured man complaining about how horrible his situation was. Like me, he was not in a good place mentally. I remember thinking "Well, shit, at least you don't lose half your strength or more when it gets a little warm out, and you're not going to get worse! And I don't know when my M.S. will stop progressing -- or even if it ever will!"
He was paraplegic like myself, and while I now realize that he doesn't have it quite as 'easy' as I thought then, I still think the progressive nature of some forms of M.S. does add extra burdens (quads are a whole different story -- I look at Christopher Reeve and I thank God that I have it comparatively easy). But I will state for the record that any disability is horribly traumatic when it is your own. What you have to do is to get beyond that and learn how to deal with the new state of your life. And with M.S. -- and I speak from personal experience here -- it is critical to get control of yourself early. Regrettably, no one told me that (or if they did, I tuned them out in my self-pity -- sometimes I have to be approached with the subtlety of a wrecking ball). This is important regardless of disability, but the reason I stress this with M.S. is that this condition can not only be frustrating, aggravating, annoying, and so on, but there is another and very dangerous "ing" with it -- and that is "self-fulfilling".
To use myself as an example, I was diagnosed in 1980 (fortunately a little after I got my present job - eliminating any possible "pre-existing condition" clause in my health insurance), and the first few years weren't too bad. I was not exactly an athlete to begin with, so having to use a cane and a brace or two was no big deal. But then in '84, things started getting worse -- and I started reading up on M.S. and getting paranoid - and depressed. Now, the nice thing about working in a hospital (aside from having a reasonably comfortable place to crash if you get stuck at work in a snow storm) is that there is a medical library on site with all sorts of interesting reading on hand (especially if you get stuck in a snow storm :-) ). The dangerous thing is that there is a medical library on site... Why dangerous? Because medical journal articles specialize in worst-case and "interesting" cases, not in average scenarios and mild, uncomplicated cases. Thanks to working in constant contact with doctors and nurses, I have learned a little about medicine (including how to look up what I don't understand) and I found myself reading up on all the different ways M.S. can really... er, complicate (to be polite) one's life.
Consequently I started doing the worst possible thing: anticipating my future. And my body very obligingly fulfilled my expectations and the course of my M.S. accelerated until both my doctor and I were projecting a probable future (if you want to call it that) for me in a nursing home under total care. I went along like that for a few years until I got a wake-up call through my room-mate at the time.
She is a nurse, and had been hiding a substance abuse problem from me - until she got caught at work and sent to rehab. Our relationship had to end for her to focus on her healing (though we kept living together for a few more years for practical reasons), but as I watched her progress, I had to gradually start looking at myself, and I eventually had to admit my own depression. I also grew afraid that dealing with my self-pity and depression had driven her to her problem. It took some long and down-and-dirty talking, but she finally convinced me that her problem far pre-dated our relationship. But now I had gotten a look at myself, and it wasn't a pretty picture. In fact, it was rather embarrassing. There I was, vice-president of the Temple University chapter of Psi Chi, the National Honor Society in Psychology, an honor student in the psychology program putting together a research study on the effects of pre-operative depression on the post-operative recovery of open-heart surgical patients -- and I couldn't recognize my own depression! Now I know why psychologists and psychiatrists don't treat themselves!
I didn't immediately get my head together, of course, but it was the start of my learning to appreciate all I had to be grateful for -- including the fact that my ex-roommate had taught me the importance of living "One Day at a Time". There are some interesting parallels between disability coping and substance abuse recovery in the Twelve Step Program. She has long since moved back home out of state to continue her life, and it took a couple more relationships for me to help me continue getting my head together -- a process I still have to pay attention to from time to time as difficult situations arise (especially now that I have had another drop in functioning) -- but I will never forget the lessons I learned from her. And they are lessons you may also need to learn if you're reading this. And of note, is that once I started to gain a more realistic and positive perspective, my M.S. slowed its progression drastically. It hasn't stopped (sigh), but I am not going to worry about what I can not control. I'll deal with it then -- with the exception of being careful not to dig any holes too deep to get out of if I should get much worse.
Which brings me to a last statement before I go into some specific strategies for dealing with a new disability: beware of one particularly sneaky trap: credit. My way of dealing with depression was acquisition. I had a decent job and excellent credit -- and I used the latter. And once I got my head together, I had already dug a nice deep hole and was unable to do much more than make minimum payments. And of course when emergency situations arose, I had to use more credit to take care of those. I got as deep as $38,000 in debt recently after a long series of unexpected medical and handicap-related expenses, and I finally had to bow to the inevitable and declare Chapter 7 bankruptcy. I was "robbing Peter to pay Paul" with cash advance checks -- because I could no longer make minimum payments.
PLEASE do not make the same mistake! It took years of hard work, but I cleaned things up and just moved into a newly built accessible house built by Habitat for Humanity of Chester County.
But, to get on with this page...
How to start:
First of all: stop taking your disability personally! God, the Universe, circumstances -- the cat (or the dog) -- have not all conspired to make your life miserable.
Next: take charge!
Aren't catch-phrases wonderful? But seriously, they are important. The most important thing is probably to avoid projecting and second-guessing your condition. That way lies ruin (take it from one who knows!). What you have to do is to avoid being overwhelmed by all of the problems you may be having, and start separating them into individual, discrete (I know - that's redundant) complications that you can tackle one by one.
OUCH!! For someone with M.S., who the h*ll can deal with all that at once?
Okay, so break it down. Let's address each of these common problems with M.S.
1.) Walking problems. Why? Foot drop? There is a brace called a MAFO (Modified Ankle Foot Orthosis), that fits invisibly inside the pants and shoes (sorry ladies, a bit more visible with a skirt) that supports your foot to keep it at a right angle to your leg so you won't trip over your own foot. Is balance the issue, staying up? Will a cane help? A quad cane? Or Loftstrand (Canadian) crutches? A walker, even? Or are you unable to walk at all? Then the question becomes one of what type of wheelchair you need. Consulting with a rehabilitation specialist is essential. Manual chair, power chair -- what type of the latter? In each of the above cases, it is imperative to carefully identify the specific difficulty, and the remedial course for that. Okay. That's one. Next one...
Urinary incontinence Male or female? (I doubt you'll have much trouble with that one). First(!!!) seek out advice from an urologist specializing with this problem. Many hospitals have incontinence centers. Ask around. But, as a quickie overview, there some solutions. For men: In addition to drugs that may help, we have more practical, external plumbing which is readily fitted with external, adhesive condom catheters (I remember trying to describe them when speaking at a convention, and I called them my catholic condoms - because they improved and concentrated my aim). But they roll on the same way and are held on by an adhesive coating, and the catheter attaches to a tube and a leg bag worn under the pants to keep me discretely dry. I have used the "Hollister self-adhesive Extended Wear Urinary External Catheter" since 1980 (now 2008). They stay on from shower to shower (24 hours) with no problem. For clients who need to straight-cath, I don't know enough. Speak to people who do! 8/21/12 NOTE: Then there is what I use now sincc the end of 2011 when I had peniile surgery to remove a non-functioning implant and was circumzized at the same time (not done in Sweden when I was born). I was fitted with an indwelling Foley Catheter changed monthly by my Urologist or visiting nursee. For women: There was an external catheter system for women also, but due to the difficulty of fitting it within the labia and keeping it positioned securely, it is not recommended for women engaging in more active endeavors -- IF you can still find it since it was discontinued. However, incontinence pads such as Poise and Serenity have made great strides in keeping wearers comfortably dry while minimizing irritation, and if you plan fluid intake and voiding, its possible to keep control. Again, consulting with an incontinence specialist is vital. For both men and women, there are also other options, both medical and surgical, but seek out a specialist! (see also Sexuality and Disabilities where I discuss some bladder issues for both men and women).
Visual problems This is a bit more tricky. I have not had many of these, but I did have severe blurring in one eye, and then severe double vision in the early stages of my M.S. (and once for a couple of weeks recently). There are some medicines that may help, but an eye patch may be necessary. Then you get used to it and learn to negotiate your way with it. But consult a specialist.
Balance problems This goes in with walking difficulties. The same aids that help with walking, will help keep you steady, but talk to your doctor.
Coordination impairments This is one of my curses, which ruined a promising art career and reduced me from typing seventy words a minute to about twenty as a two-finger typist who has to look at the keyboard because I can't feel the location of my fingers. Here finger exercises may help, but re-training and patience are all that can be done. Do your own occupational therapy after talking to your doctor to see if you can get some provided. For typing issues I use Word and Dragon Naturally Speaking voice recognition which is 90% accuratate once traiued (easy and fun - just read material you select).
Sexual dysfunction This is a biggie. This has spawned three chapters in a book I am working on (again, seerecogn Sexuality and Disabilities), but as with incontinence, let's hit a few highlights. Again, seek out an urologist specializing in this!! For men: First, keep in mind that an erection does not great sex make. I had a penile implant (the wrong kind) and never got the use out of it that I expected, but it didn't stop my girlfriend at the time and I from having great sex (see my home page motto: "If what you got don't work, work with what you got!". There's nothing wrong with my tongue, only a little wrong with my hands, and nothing wrong with a few toys.) So, first talk to a specialist, who has to make a determination of neurological impotence. Then there are a number of options. a) pharmacological. Who HAS NOT heard of Viagra? And there are medicines injected with a fine needle which will bring on an erection. b) vacuum device. This stimulates an erection which is maintained by a tight constricting rubber band. WARNING: pay attention to Viagra cautions, and for the latter two options, it is vital not to overmedicate or leave the band on too long, because if the erection is too prolonged, damage can result. c) prosthetic implant. There are three types of these, imbedded surgically into the penis. 1) malleable rods. These can be bent and leave the penis perpetually erect, just bent as needed. 2) self-contained inflatable (the kind I had, and then had a real problem operating - but I didn't feel like getting sliced again). These contain a fluid reservoir in the base of each cylinder triggered by squeezing the tips and deflated manually. 3) multi-part inflatable. The fluid reservoir is embedded in the abdomen, the pump in the scrotum, and the cylinders in the penis. Pressure on the pump, pumps fluid into the cylinders for an erection. Each of these have pluses and minuses, but as they require an invasive procedure, they should be carefully discussed with your doctor. For women: A major problem due to loss of sensitivity (especially for women with spinal injures), is a lack of lubrication. Substitute lubricants (water-soluble!) can be used, along with planned fluid intake and careful positioning to avoid pressure problems. Drinking a good amount just prior to sex sounds like strange advice, but it can assure good flow-through afterwards to reduce the chance of an infection.For men and women: First of all, it is vital to learn to feel with ALL of your body. Get your focus away from "penisvaginaonlypossiblesexualsatisfaction". I'm running that together on purpose, because that's the way most people think. But we have sensory nerves all over our bodies capable of differing degrees of pleasurable sensitivity, so USE THEM!. And learn to focus on your feelings, and to learn to tune in to and share your partner's pleasure. Personally, I may not be able to achieve orgasm anymore, but I can't tell you how delicious it feels to have a woman lie in full contact with me, and also to be the one to bring her pleasure, and to share it through our feelings.
Finally, let me add that some of these are problems specific to M.S., but others are common to other disabilities -- and the idea for handling any disability is pretty much the same.
Points to remember:
1.) identify each discrete problem, 2.) develop a solution for each problem -- one at a time, and 3.) Implement each solution. The idea is to take control of your situation and be proactive, not reactive. You would be amazed at how much better you feel when you assert control over yourself.
Living With Your Disability
"All right, now I have an idea for some ways to start dealing with my disability -- but then what?"
This is part of the first issue, and it is a tough question of course, and I don't profess to have all the answers -- to be honest there are days when I just stare up and cry "Why?" and I just want to curl up in a corner somewhere and disappear. But then I realize that with my luck, the cordless phone will be over in the opposite corner and I won't be able to get to it to call 911 for help to get me up off the floor. Besides, with me on the floor, who'll feed the cat or empty her litter box? She gets very annoyed if I forget :-). So, I grit my teeth and go on.
So how does one go on? I have a few suggestions that I hope might help here, and I will run some more by you as I get time, but let me start with one effective technique I like to think of as an idea of mine -- though I am sure that some variant of it has probably already been suggested by half a dozen (at least) other disability adocates.
Keep a diary.
Don't scoff. There are sound reasons for this. To be honest, this is something I wish I had done. Not just for the coping reasons I advocate here, but also because it would have made the writing the autobiographical section of one of my book projects easier.
But, computers have come down incredibly in price, so get one! And get one with a modem and Windows (unless your a Mac-ophile), or if you're blind, get a good screen reader and learn how to use it. There are all sorts out there now that even make Windows and the Mac accessible. This sounds stupid considering you're sitting there reading this with a web browser -- but maybe it's not yours, or maybe a friend of yours is having you read this over their shoulder, so pay attention :-). But there is so much incredible disability information on the Net that you would be foolish not to take advantage of it (and not just here :grin:). And get a decent word processor. These days, most computers come bundled with one, so learn how to use it, and a net browser. An independent service provider can be as cheap as $10/month if you prepay for a year or two. Besides, e-mail gives you a cheap and easy way to reach out to others with the same disability for resource information, companionship and peer support.
Now organize your diary in this specific way. For each day, make four separate entries (I know, at first this will feel tedious, but after a while, you'll see the reason for it and be grateful you did it). With a word processor, it's easy to make a template form, which you can then copy and fill in each section accordingly.
The first entry is Things I am grateful for. I think you can figure what goes here. Except for the first day when you should really work your brain to list everything you can think of, list just one item a day. Limit yourself to one a day because there will be days you'll be reaching for something to write here -- that's the reason for the first days list -- to keep from repeating. Always try to find something new that is not on that first day's list; leave those for the days when you can't think of anything new. And don't be afraid to reach for seemingly insignificant reasons. But if you have to repeat yourself, that has a purpose, too, as reinforcement.
The second item is Things that make me angry, scared and frustrated. I am sure this won't be too much of a problem to detail either. Just like the first category, let it all hang out the first time. And then again, list just one item each day.
This brings me to the third category, What can I do with today's frustration?This relates to my initial strategy of breaking down all your challenges into individual components in order to make them easier to deal with. The reason for these three daily items is to balance out your frustrations and to get you into the habit of thinking interventionally -- and to get a daily dose of positive reinforcer.
And finally, What I did today is your normal diary entry.
Keeping this diary serves a number of functions. First, it adds a constructive element of continuity into your life. When you feel like your life is deconstructing or destructing, you need this to keep a balance in your life. And one of the most important functions of this diary process is that it helps you to gain an appreciation and greater awareness of positives you may have that you might otherwise overlook. The other biggie is that it teaches a problem-solving approach to life -- a way of approaching your problems analytically to deal with them methodically, instead of reacting automatically and helplessly. Also, later on, this gives you a chance to go back and look at what you perceived as problems earlier, and I'll bet you'll get a nice surprise when you see how you've grown. We all need some reinforcement like that.
I will continue with this page later, but mull over this for now, and if you have any tips or reactions,E-MAIL me at email@example.com.
Information provided at this web site is of a general nature and is not intended to take the place of a physician's advice. It is vital that persons diagnosed with, or suspected of having, any disability or medical condition consult with their physician or with the appropriate division at a major teaching hospital, to assure proper evaluation, treatment, and interpretation of information contained on this site.