JUST MY OPINION

Taken from my website "How to be Disabled In America" http://www.skcllc.net/

The blizzard of 2010 is all over the news with airports closed, roads blocked, streets flooded and electricity out. Whenever catastrophes like this happen my first thought is "What about the disabled?" I'm more fortunate than many in that I have a local man who comes over and shovels me out for a small charge. But I'm very aware that I'm left at his mercy. I pace from window to window while I wait for him to arrive, looking out to see if he's started yet. There's no getting to my van with all that snow in the waY. I start speaking to myself saying "When can I get out? When can I get out?" I run through my mind to be sure I've got enough supplies for a few days. No matter what the season I try to make sure I've got extra groceries and staples like paper towels and canned food in the house. I live in terror of being stuck in the house and running out of something I really need, like oxygen. I recently discovered a food delivery service called Peapod (http://www.peapod.com). I order my groceries online, pick the best delivery time and they show up at my door a day or two later. Again, I always order extra this or that so if I'm stuck because of weather or health, there are always some basics in the house. I think alot about people who don't have my options. How do they cope? Screaming might not help but it does relieve the tension. Just remember your neighbors might misunderstand. If you're reading this do you have any techniques or ideas that you use to cope with bad weather as a disabled person? Write to me at skemp@skcllc.net with the subject line "What About the Disabled?" and let me know. By the way, rain when you're wheel chair bound sucks.too.

WE CAN'T ALL BE AS BRAVE AS ELIZABETH EDWARDS

WE CAN'T ALL BE AS BRAVE AS ELIZABETH EDWARDS
From my webpage: http://www.skcllc.net/ - How to Be Disabled In America

Edgy is one of those words like pornography. I don't know how to define it but I know it when I see it. It's my intention to make this website "edgy." I'm a cranky, pissed off disabled person. I don't consider becoming disabled to have been a life-enlightening moment. Frankly, I'd rather have the ability to walk freely back. When people tell me "I'm an inspiration because of how well I manage this change in my life" I want to tell then to stop by my house around 3AM and see how well I'm handling things then. There's a whole lot to be angry about (don't even get me started on the Americans with Disabilities Act) but to let you know that I'm not entirely dark and cranky (even though I'm an African-American) I wanted to share two of my favorite videos with you. Every day the local college track team runs past my house. Watching them run is like watching gazelles running across the savannah-heartbreakingly beautiful, all the more for knowing I'll never run like that again. When I told a friend how sad I was feeling she sent me a video called "Where the Hell Is Matt Dancing-2008." Matt travels around the world getting various cultures to dance with him. It gets me smiling and crying at the same time. My other favorite video is also a dance one. I'm a sucker for people willing to make themselves look foolish in the name of having a good time and showing friends they love them. Its called "Wedding Dancers." This is as bright and sunny as I get at 1AM on a Wednesday morning. As I write and send more information you'll probably find yourself wondering "what happened to that semi-happy disabled woman?"

GIMME THAT OLD TIME ACCIDENTAL SPEED-WAHOO!

I take something in the vicinity of 37 pills a day, half of which are pain killers. This many pain killers makes me positively narcoleptic unless my mind is fully engaged. In other words I can drive safely when I get home and sit for more than 10 minutes I fall dead asleep. I almost drowned in plate of mashed potatoes when I was in the hospital.  So one of my doctors the newest drug for narcoleptics - Neurvigil.  She checked  me out on a low dosage and  then upped it big time. I got the prescription filled, didn't pay attention to the time and popped one at noon. Now here I am at 3AM wide awake and CLEANING THE REFRIGERATOR!!!  That's when you know you're over the edge. I took everything out and put it on the floor and washed all the shelves. The frig looks great and I've still got energy to burn.  I'm actually thinking of vacuuming the living room.

When I was in my twenties I worked way too many part time jobs, some at night.  I used to buy speed from a woman I worked with. I would write her a CHECK and then on the memo line write "speed." Arghhh... Someone must have been watching over me because its a miracle I didn't get busted.

Another story - in my twenties I bounced a check and then forgot about it. Months later a sheriff's deputy came to my apartment to arrest me for the check unless I covered it immediately.  I was terrified with visions of being dragged off to jail so blurted out "Will you take a check?"  He laughed so hard he had to step outside to catch his breath then gave me til the end of the week to get the cash. Believe it or not years later we became good friends when he ran for office. I helped him with his campaign . Each time we meet we say will you take a check?

I love having this much energy. I rarely get out of bed before noon because the pills and the illnesses knock me out. I've learned to make appointments for after 2PM and do as much as I can on the Internet. If you've never heard of Peapod check it out. You order groceries on line and then deliver them to your house.  Yet another great thing the Internet has done for the disabled.

Which reminds me - I'm completely changing my website to provide disabled information from the perspective of someone that can't be Elizabeth Edwards.  In other words we can't all keep a stiff upper lip and serve to reflect nothing but the positive in times of serious illness. I'm trying to get up the courage to write the piece but I thought out of respect I'd wait a week or two after her funeral.  I'll let you know when the web page goes up.

It's Not What I Expected - November 25, 2010

I did not expect to have such a difficult time with the idea of feeling better. If you've spent most of your life dwelling in the dark places (you know who you are out there) then coming out into the light is a truly scary experience and that's where I am right now. I'm feeling genuinely good since the August hospitalization. That is to say great emotionally. My cadre of doctors continue to tell me I should be dead and I swear I'm not making that up. Some marvel that I'm alive and some seem genuinely confused. One of them gets so sad about the whole mess that I wind up comforting him by saying I'm actually feeling a little worse for the wear. No one should feel compelled to comfort their doctor but then again they're human too. I always question which type of doctor I would prefer - a House type personality or the general doctor personality - 15 second perfunctory visit, glance at the chart and scarcely remembering who you are or what meds they've prescribed. Oh yeah, did have my mammogram yesterday which is tantamount to smashing my breasts between two bricks and being told to hold my breath while doing so. Despite have to have several films because as the tech so kindly said "your breasts are wrinkly so it makes getting the picture difficult."

Anyway, saw a total of six doctors this week. Can you believe it? I've developed a nasty side effect and so far no one has been able to figure out how to fix it. Stop reading now if you gross out easily. It's called fecal incontinence which means I have no sensation of having a bowl movement. I wear an adult diaper 24/7 and live in constant fear that this will happen while I'm out in public with only the smell to alert me. Talk about your hidden illness. I KNOW there are other people out there with this problem (thank you Dr. Oz) but like me its just not something discussed in polite company. I've even had a couple of doctors grimace when I talk about it. For now one doctor has me off ALL carbonated drinks for the next two weeks as a test. He thinks that carbonation can be a major trigger for severe diarrhea. I'm open to trying anything. I finally got over the agoraphobia and now this. Whine whine whine. The thing is the concept of not being depressed is so new to me that this latest physical issue gives me permission to drop right back into old habits - hiding out and staying in bed. After all who wouldn't be depressed about crapping all over themself without warning. Yikes! Still I'm fighting and living on Imodium and being hopeful the doctor is right about carbonation. But consider this...if a doctor told you you were dying but still said you should give up the foods and drinks you really enjoy would you? You life is shortened anyway so why try? I wrestle with this one every day.

I'm off to my son's and daughter-in-law for Thanksgiving dinner. He put himself through college as a cook and is fantastic at it. After so many years of making dinners it wonderful to have someone cook for me.

The Truth About Retirement

A long time Facebook friend wrote that her husband was about to retire. It took everything I had to not shout "Tell him not to do it!" Since I started working at the age of 14 retirement has been held out to me as the be all and end all of our lives. It would be a time when you could finally do the things you'd dreamed of. TV shows us retired people living in beautiful private communities, golfing, going on cruises or traveling around the world. These commercials of course, never mention you need money to do any of these things.



I was raised by a child of the depression who often told me what life was like before social security. There were no fall backs like unemployment, welfare or social security. Families doubled and tripled up in tiny apartments. There were nights when there simply was no food and that was that. You couldn't say a bad word around my mother about Franklin Roosevelt, the father of social security I think. Between social security and a pension, she said, I would be set for life. When I vested my time with my State job I had no idea what it actually meant or why people were so happy for me. It was still a time of "set for life" jobs. Being a State employee was considered so powerful that you could walk into a car showroom and buy a car purely on the power of being a State employee. Those really were the good old days.



I left my job as an appointee of Governor George Pataki (see blog history) courtesy of Eliot Spitzer sending me a letter saying I had two weeks to get out of my office. What goes around comes around doesn't it? Anyway I decided to start my own grants business but quickly learned that the old timers who said things like "At least you've got your health" weren't kidding. I had to close the business but what I learned quickly was how hard it is for a Type A personality to operate in a world that has little patience for retired people without titles. I still miss water cooler Mondays where you stand around and talk about what you did over the weekend. I actually miss meetings because what I didn't realize is they're a form of social networking too especially if you actually achieve something. I can honestly say I miss almost everything about work. OK on snowy winter days I'm delighted that I don't have to clear the snow off my car or drive on scary slippery streets. I've been retired for going on four years now and have been miserable every step of the way which maybe why my health has been so bad. But something shifted inside me in the last few months.

No miracles but perhaps a quiet acceptance of change. My husband said he's looking forward to retiring one day because it will mean the end of doing things he doesn't want to do and his statement really clicked with me. Yes I'm aware that this could also mean the Prozac and Wellbutrin are finally working. I can only say something turned over inside me, something changed. Maybe its having to sleep in the living room (more about that in the next entry) or just finally understanding what feng shui means. Either way I can honestly say I think I feel better and if you've been following my blog you know this is an earth shattering statement for me. However my health still sucks so I continue to have something to complain about...LOL!

Up Again at 2am

I've been writing inside my head so much I decided it was time to pull things out and put them on paper. I'm just out of the hospital again after a two and half week stay. Each time this happens I'm hopeful that the shock and humiliation of it all will result in my changing what I believe are some unhealthy behaviors. It almost never does although after the 2007 intubation I finally stopped smoking. I'd been a smoker since the age of 14 so believe me it was no small feat. However, I'd wound up on oxygen 24/7 and frankly couldn't figure out how to use a lighter around oxygen. I had visions of people diving out windows every time they saw me try to light up. So I locked the image of the intubation tube down my throat and thought constantly of the movie Alien. I kept waiting for something to come out of my stomach. I'd tried everything including Chantix but nothing worked. But visualizing that tube down my throat was more horrifying than anything I could possible think of related to smoking. I've been a non-smoker for 3 years now and there's not a day I don't miss it.
Working seriously on self-change is exhausting!


This time I went to the coronary care unit because they thought my heart was going to stop. And still I come out of these events able to talk and think and function. The doctors always say they're amazed but my husband tells them "If you're surprised she's alive then you don't know my wife." I think he's afraid I'll come back and haunt him if he pulls the plug. Still I took the realization that my bed would have to be moved to living room very hard. I'm adjusting and the house actually looks larger. We put our beautiful sofa bed out on the curb with a free for the taking sign. It was gone within an hour. Slowly but surely I'm working on this healing thing.

Still Alive

Just a quick note to say I'm still alive. Just finished my income taxes and am staggered at the amount I spent on medications and medical bills in 2009 - almost $10,000 and that's with "good" health insurance. Never thought I'd agree with a Democrat but Obama's right - the medical system is out of control. Thank you for the kind supportive emails. I'm hanging in there. The Prozac is really starting to work. I volunteered to worth with a local disability advocates group. The irony has not escaped my notice. As my therapist said - the years will go by whether I decide to do something or not.

A Different Point of View On Race

I have strong opinions about race. I'm allowed since I'm black. I remember my mother being absolutely appalled when we kids (I was a teenager in the sixties) started called ourselves black. She said when she was a teenager she was delighted when whites finally started calling blacks Negroes. It was a tremendous step up from nigger. She was born in 1910. I was born in 1953. Martin Luther King had not gone to the mountain top yet so things were still pretty ugly in the early 60's. I spent most of my time being called white girl and being told I talked like a white person. But at home my mother insisted I speak proper English. She bought a set of Encyclopedia (which back then was the equivalent of buying a used car) and demanded I read them from cover to cover. I think this was to compensate for her brutal abuse but that's another story.

All of this training led to my dropping out of high school. You see I went to the guidance counselor when I was in high school and said I wanted to go to the Philadelphia School of Music to learn how to be an orchestra conductor. She gently said that my people generally went to the local training school to learn how to be top notch cleaners, janitors and maybe if I worked real hard - a nurses aide. I dropped out the next day and ran away from home. Long story short, I came back a year later pregnant. Anyway I spent most of my adult life overcoming many of the really dumb mistakes I made in my teens. I went from being a high school dropout to graduating from Vassar in my late thirties. I gave the commencement address at the local community college I graduated from, an experience I highly recommend. It was phenomenal! I went from being a teenage welfare mother to being appointed Assistant Welfare Commissioner for my state. And then everything came to a halt. I've been frozen like this for the past three years. You know how the old ones would say "Well at least you've got your health." I always thought that was such a ridiculously weird thing to say but I totally get it now. My brain is as much on fire with ideas as it was in my 30's and 40's. Writing, books, articles, editorials, thoughts, thoughts, thoughts. The difference is my bad health has left me frozen, frightened, afraid I'll be hurt by someone if I say the wrong thing. So this is my first attempt to break out of that icy encasement.

For 25+ years I worked in the grants/non-profit field. Too often I saw organizations given breaks because they were minority operated and the white folks funding them didn't want to risk being called racist. I saw an article the other day about ACORN closing and that's what set me to thinking. Everyone knew it was poorly managed long before the stupid setup they got caught in. But why didn't anyone say something? I can't tell you how many times I've seen gross mismanagement that no one would address. At one point in my career I was hired because I was black and willing to take on the organizations that needed a serious house cleaning. To me the federal regulations were not grey, they were black and white and strict. They did not have wiggle room. Looking back there were times I should have allowed a little wiggle rather than shut an organization down. But I was so afraid of getting it wrong that the Federal regulations became a bible to me. Still I did a great deal of teaching about how to manage grants and I'm proud of that. Any organization that came under my tutelage was expected to adhere to the regulations governing their particular grant. I think one of the biggest mistakes and changes is that back in the day when a federal or state grant was given the organization was expected to spend 3 to 5 days in that state's capital being trained or in Washington if it was a federal grant. As time passed this changed from face to face training to conferences calls to online training to being sent a 300 page manual with the "suggestion" the grantee review it. To be given a quarter million dollar grant with little to no training is a setup for failure. To move from that to fear of saying there are mistakes is an even greater setup for failure.

So this is me, stepping out of the ice cave to say its way past time to stop expecting to be given breaks based purely on being on the side of the angels or because of race when you screw up. It may be a part of the overall scheme of things but the days of it being the predominate reason for looking the other way when serious mistakes are being made should be over. Deep breath.....whew.

I Made It Through the Winter

WAHOO! I made it through the winter. Believe me when someone tells you you may only have six months to live, living a year is a very big deal. I saw the pulmonologist who was shocked at how well I was. I'm working with one lung but that's much better than they initially expected. You have to be below 50% lung capacity to even be considered for a transplant. I feel like I spent the entire winter trying to climb out of a deep well and now I've finally got my fingers on the edge and may be able to actually pull myself out soon. First, all jokes aside, let's hear it for Prozac. It has literally been a life saver for me. It ain't easy when you're feeling suicidal and there are two, count 'em two high bridges within walking distance of your house. So to avoid the bridges I spent most of my time curled up in my bed watching DVDs including the complete seasons of Sex and the City. I've even got parts of conversations memorized. I know more about the characters personalities than the actors do. lt always amazes me how easy it is to lose muscle mass when you stay in bed for even a brief period of time. Of course my wonderful devoted husband took his usual extraordinary care of me. Things got so bad that at one point he had to feed me. All I could eat was applesauce because of an infected throat. A long time ago a therapist told me "Never underestimate the importance of just being able to get out of bed in the morning." I totally didn't get it back then but I sure do now. The first thing I did (after I took a much needed shower)was call a good friend who works at a non-profit and say "I need somebody to help." I'll be volunteering for two hours a week helping...wait for it...the disabled. Since I've been fighting the label of disabled for ten years I find this particularly ironic. Don't tell me the God's don't have a sense of humour. I know that helping others for those two hours is going to be really tough physically but I've got to get outside of myself, if you know what I mean. I've got to be reminded that there are others who need help, who are in worse shape than me. So maybe I can help them by just talking.

You remember my promise to myself to get financially straight by the end of the year? Well I paid off a major credit card this month. I'm trying to not look at my debt as a whole. Its too overwhelming. So I started with the lowest credit card and am working my way up the list. I don't care what the economic pundits say, there ain't no jobs out there! My husband has been searching for nine months now and so far had only had three interviews. So many people showed up that it's almost not worth the effort. But he keeps trying and I'm deeply grateful for all he does. He went to a job fair in February and there were close to 3,000 people there.

Many thanks for the kind and supportive emails telling me to hang in. Things like that really matter when you're down. It keeps you going. I've spent three years trying to pull myself together for this journey. I think the journey's about to begin.

My Absence

Please pardon my absence on line. Sometimes my illness get the the better of me. I’m able to sit up now at the computer for brief periods of time and expect to be back to myself in another week or so. This time it was a severely infected throat, which the lupus wouldn’t let heal followed by the temporary loss of the use of my right hand. You can’t make this stuff up. Hope all’s well with you and yours. Susan

This Astonishes Me

I realized today that I have absolutely no reason to get out of bed. If it wasn't for Herman needing to go outside and then be fed twice a day I doubt I'd get out of bed at all. It's astonishing! I was go go go for so many years - college college work work work and suddenly it all came to a grinding halt and here I am am. Standing still.

I went to check my email and there were 3 requests for grant searches. Since I don't believe in coincidences I've got to believe that the universe is speaking to me...rather loudly. It seems to be yelling GET UP!

Herman and I Are Down for the Count

They say that sleeping for long periods of time is an example of being depressed. Well I can't drag myself out of bed before 1PM most days. It doesn't bother my dog Herman at all because he's adopted my schedule and sleeps as long as I do. The thing is that it's his sleeping so long that bother's me. A dog shouldn't sleep so long. Even if he's just out on the backyard run he shouldn't sleep so long but he wants to be where I am and I'm in bed. I haven't left the house in a week, sometimes two weeks if I don't have a doctor's appointment. Someone asked me what terrible thing would happen if I left the house and I said someone might recognize me and ask what I'm doing these days or ask how I am. I couldn't bear saying I'm doing absolutely nothing. I can think of things I could or should do but I'm not. It takes too damn much energy to even get dressed. In part I'm on a new anti-depressant which makes me sleepy but I'm supposed to reach a point of adjustment. I sound so self-pitying I don't think I could stand to read this if someone else was writing it. But even if it was 1pm I did get up and a therapist once said never under estimate the importance of just getting up. So I did manage to face another day. I'm hoping that I'm getting better bit by bit and just can't see it.

A Quick Note

Just wanted to say Happy New Year to you all. You already know my resolution (to be in a better place at the end of 2010) and I'm wishing you all luck with whatever resolutions you may have made for this new year. Just watching the 11pm news, so much violence, so much death. It definitely makes you sit up and take a longer look at yourself. Somehow your life isn't quite so bad in the face of what many are struggling with. It's humbling.