God Knows

I got the call at about 12: 30 this afternoon. It’s official. My sister has Parkinson’s Disease. It wasn’t a shock really. She has had numerous symptoms over the last couple of months. She lost her balance at a graduation ceremony. A few weeks later she fell and broke her wrist so badly that she required surgery. The tremors in her hands have been present for a long time. Finally, a doctor put it all together and suggested that she undergo numerous tests. The diagnosis came this morning. When she called to let me know, I asked her how she was doing. She said she was numb. She tried to go back to work but she couldn’t. She was just too numb from getting the news today. That is a feeling that I can completely understand.

God knows I learned a long time ago not to be surprised when challenging things happen in my life, or to those around me. I might need to take some time to process a situation, but I like to think that eventually, I know how to get up and keep going. That skill is what has helped me to survive. I was born with cerebral palsy. My brother was paralyzed in a car wreck when he was 20. He has been a wheelchair user since 1987. And now my sister has Parkinson’s Disease. My siblings and I are three for three when it comes to disability. That isn’t a reality my family would have ever expected. I guess it just is what it is.

It would be so easy to bang my fist against a wall today and give into the “whys” and the “what is going to happen?” And if that is what I chose to do there would be nothing wrong with that. I have just learned that for me, at the end of the day all that will give me is a hand that hurts and many more questions than I started with. I don’t want to spiral south in a nosedive. I have done that before. And it didn’t work so well.

When my brother was paralyzed, everything I understood about the world turned inside out. I wondered how a good God could let this happen. My family already knew what it was like to have a family member with a disability. Didn’t that make us exempt? What would be the point otherwise? Since I had never known any different, I wondered what the process of adjusting to a disability would be like for my brother. And I asked why. A whole bunch of times. The process went on for several months. I never got any satisfactory answers. Over a period of years, I came to the conclusion that my brother’s accident happened because it happened. He survived it. These days he is thriving. And God was there the whole time.

So, this time I am going to make the choice to go with what I know.

I know that challenges that affect my life tend to be much less overwhelming when I take them one day at a time. Or maybe five minutes at a time if that is what I need to do.

I know that there are new medicines and therapies being developed all the time for all kinds of things. I read an article recently that said that boxing was good for Parkinson’s because it required balance and coordination. Who knows? My sister might be the next Laila Ali.

I know that good things can come out of seemingly bad situations.

I know that it is okay to cry and to say “It’s not fair” for a while, as long as I don’t get stuck there.

I know that I have several good people in my life who I can talk to if I need to.

I know that my sister can be a badass when she needs to be.

I know she has all kinds of support around her. And that her husband and kids will be okay, no matter what this diagnosis means for them.

I know that my sister has lived in a world with the dynamic of disability for many years. Hopefully, that means she can adjust to what she needs to whenever she needs to, and that she doesn’t see disability as anything much different than the norm.

I know the good things in my life are still good.

And I know I will do all I can for my sister, despite living several states away.

God knows the whys.only_god_knows_why_by_joiecatipon-d337njh God knows my sister can handle this. And indirectly so can I.

 

 

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By George…

When I first met him, I didn’t know what to expect. I’d had numerous counselors before. Some were good. Most were average. So when I went to the mental health center that day to meet him for the first time, I didn’t think much would come of it. For the first few sessions, I raked him over the coals. It’s not something I am proud of as I look back on it now, but I think something inside me needed to know if he could truly deal with some of the issues that were prevalent in my life.

“What qualifies you to work with someone with disabilities?”
“Do you understand that my physical disability is not the main issue that I struggle with?”

His answers were always wise and gentle. And as we got to know each other over the next months and years, he helped me to dig deeper. He encouraged me to feel things that I wasn’t used to. When I was having a hard time, he reminded me that I was a good person. When there was a behavior that wasn’t working for me, he called me out on it, but never with the result of my feeling bad about myself. He taught me the concept of mindfulness–living in the moment without regretting the past or fearing the future. It’s a practice that I still need to practice, but I am getting better at taking one day at a time.

Eleven years. George worked with me one on one every week for eleven years. In the process, he chipped away at my anger and my self-doubt. He encouraged me to try things that I didn’t think I was capable of. He helped me to analyze relationships and taught me skills and strategies to use when I wanted to communicate effectively. He supported my writing and my advocacy efforts and always wanted me to tell people what I needed, whether they were receptive to me or not. And he always reminded me of my progress on the days when I would sit in his office and cry because I didn’t feel like I was making any progress at all.

There were a few months in the course of our working together when I couldn’t leave my house after a complicated surgery. George left his office and came to my home during that time. He understood that I needed him badly.

In 2015, for reasons that were both personal and professional, George got a job in Topeka, and our counseling relationship came to an end. Devastated does not do my feelings justice, but I knew I was a completely different person than when George and I first met. He is a truly gifted counselor and he had shared those gifts with me. Read more about George here.

This morning, I was outside with a caregiver. We were trimming my raspberry plants and watering the rest of my garden. Because my driveway is connected to a bike trail, I often see people on their bikes close to my house. So I didn’t think much of it when I saw a biker today. I only stopped to take a closer look when he turned into my driveway.

George? George!

I hadn’t seen him in person in more than three years. We are friends on Facebook, but his professional ethics prevent us from communicating very much.

“You were sitting outside today. I thought I would say hello.”

He showed me pictures of his grandkids. I gave him a copy of my book. I asked him questions about his family and he did the same. He wasn’t here very long but seeing him did me a world of good. In the fourteen years I have known George, the two hugs I have gotten from him were both given to me today.

I have two surgeries coming up and both of them scare me. There are some potentially scary things that are up in the air with my family, and as always I am trying to navigate my relationships in the best way that I can. So often in the last few months, I have found myself wishing that I could talk to George. He understood me so well and always helped me to figure stuff out when I just didn’t know what to do.

The fact that he sought me out earlier today let me know that he was still out there and still cares. It was a good reminder of all the work we did together and all the progress that we made.

In the next few months, I will have some challenges. But by George, I think I will be okay.

George and me

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If I Look For It

the-good-in-the-badSomehow I just knew that the news just would not be good. As I sat in that little room waiting for my doctor to come in, the sinking feeling in my stomach only got stronger. He showed me the x-ray. There is a stone taking up residence in my right kidney that is about a third of the size of the kidney itself. The best course of action is to surgically insert a tube in my kidney that will help the stone dissolve. I’m not sure I understand all of the science behind it, but I have been through the procedure and having to live with this tube on several occasions. Everything about it is downright miserable.

Most people know that I try to be a positive person in every situation I face. I don’t always succeed; I’ve been known to crash hard sometimes. But I try to look for the good in most things. Looking for the good has been difficult in this. First, inserting the tube in my kidney is not a fun process. Although I am sedated, I am awake. And because I have cerebral palsy my entire body goes into spasm for an extended period of time. I can feel the tube going in and it is instantly uncomfortable. Usually, it stays in for about six weeks or so. This time will probably have to be longer because of the size of the stone.

The tube is stitched in place and because I have full feeling in my body I feel every time it moves even just a little. That means every time I twist my body in my wheelchair or every time I transfer into my bed or into the shower, the tube moves, causing me pain. And when that tube is not where it is supposed to be, the pain is intense. The tube also drains into a leg bag that measures the same distance to the floor as my feet. I have been known to step on this tube often, putting a strain on the tube. The other side effect of the tube not being in place is that I leak pee all over everything I own. That is humiliating and demeaning. It’s safe to say that there isn’t much about this tube that I like. I also have lots of trauma around this particular procedure. The first time I had it done was at KU Med. The anesthesiologist who did it neglected to look at my chart before he started. Therefore, he didn’t know I had cerebral palsy. When I was spasming badly on the table, he was angry and he said “Stop wiggling! Do you want me to puncture a lung?” Apparently, he had a reputation for talking to his patients like that. His residents thought it was hilarious and were egging him on the whole time. I was sobbing when I was wheeled into the recovery room.

I have known my current urologist for more than 20 years. Yesterday, after we looked at the x-rays, he patiently listened to all of my concerns. Then he told me to drink as much water as I could for the next few days while he tried to think of an alternate solution. And if there is an alternate solution, I am confident he will think of it. Even if we have to do this surgery, he will be with me every step of the way.

When I got home the phone rang. It was my neurologist’s office. I have a pump in my abdomen that delivers a medicine called baclofen directly into my spinal cord fluid. The medicine is supposed to reduce my spasms. I heard yesterday that it is time for the pump to be replaced. When I had the pump originally put in, something went wrong and I leaked large amounts of spinal cord fluid for a long time. The only remedy was total bedrest, which I had to do for about two months before everything got back to normal.

Yesterday was hard.

But even with all I am facing, I realized some good things. I have a full team of caregivers these days. Three of my caregivers are guys, and they have been known to lift me pretty easily when I can’t successfully transfer myself. Members of my church would probably bring some meals by if I asked. They are pretty generous like that.  I could even probably even find some people who would be willing to watch movies and play cards with me. Whatever happens, I am going to take it one day at a time. It’s going to be hard. There is no question.

I bet I can find the good if I look for it.

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A Little Confidence

I guess it was something of a crisis of confidence. The night before I was in panic mode because the grocery store had sold out of the size of bottles of water that I had planned on serving. When I heard that, I was convinced it was a bad omen and that it meant that nothing was going to go according to plan for all of the next day. I was really scared and was having some trouble holding it together. It got so bad that I took an extra dose of my sleeping pill and went to bed early. That was the only way I could think of to get myself to calm down.

The next morning, I got up and started my day. In the pit of my belly, there was an odd mixture of terror and excitement. One of my best friends drove in from an hour away to help me get ready. Her presence always has a calming effect on me. There is something comforting about communicating with a person who has known me for almost half my life. While she was helping me to get dressed, she reminded me that it didn’t matter how many people were actually present at the book signing. I could still celebrate the accomplishment of getting my book out whether five people came to the event or a thousand. I had never considered that before. Finally, it was time to leave for the venue. The butterflies that were within me were fluttering a bit more quietly…

We were still arranging cookies on the trays when my friend Jeff, who happens to be a photographer got there. Over the past several years I have had some other book signings for my stories in Chicken Soup for the Soul. He takes amazing pictures at every event, for which I am beyond grateful. I took a break from making lines out of the chocolate chip and sugar decadence to hug him when he arrived. “I’m so proud of you!” he said while returning the embrace. That meant the world.

In the course of the next three hours, people came from just about every aspect of my life. Nurses from the hospital. A former case manager that I had not seen in a couple of years. My boss from Lawrence Magazine. A Lawrence City Commissioner. Several people I had advocated with over the years for accessible sidewalks in my neighborhood. My dance partner came with his son, which was incredibly special because I had not seen them in almost a year. My pastor had announced that the event was going on in the announcements at church that morning, so many people from my church came as well. There were even people there who never met me before and wanted to buy a book anyway. That was simply phenomenal.  I didn’t count specifically, but I would guess about 100 people came by, all told.

Perhaps the thing that struck me the most was the vibe that I got from everyone that they wanted to be there. Not only was everyone in the crowd glad that I had finished the book that I had set out to write, but the whole crowd was interested to know the information in it. I planned on doing a reading a passage from the book in the middle of the signing, but there was never enough of a break in the number of people who wanted their books signed to do so. That was a good thing.

When all was said and done, many people came to the event, many books were sold and I had one of the best days that I have had in a long time. Not only did I learn that dreams come true but also that slow and steady progress toward a goal is what makes it a reality.

I would be willing to bet that none of the people who attended my book signing and none of the people who wanted to be there but could not be were focused on my disability even for a minute. Everyone who supported this effort is confident…

We are all More the Same than Different!

No automatic alt text available.

 

In case you haven’t yet had a chance to get a copy, it is available here…

 

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God Bless Both of Them!

two guysIt’s been a few years ago now that I made the change. I stepped out of my comfort zone and did something different. It seemed pretty darn radical at the time. Not so much anymore, although there are definitely still some periods of adjustment.

For decades prior to that point, I had a strict “females only” policy. Since caregivers help me with some of the most intimate things that I do, it seemed to make sense that I didn’t want to work with guys. And then came one of the times that I was short-handed and not many people were responding to my ad on Craigslist. The ad said specifically that I wanted to work with women due to the personal nature of this job, but Aaron applied anyway, and I thought there was no harm in interviewing him. The rest, as they say, is history.

Some unexpected things happened when I started to hire male caregivers. They are typically pretty strong, so they have no problem lifting my wheelchair in and out of their car multiple times per shift.  Some have also been known to lift me when necessary. Therefore, I tend to get out of my house more and run more errands with my caregivers when there are guys in my life in this capacity. Guys also tend to be able to get me off the floor by themselves if I happen to lose my balance. Because some have been rather tall, they have been able to stretch me out well when I have a spasm or I am in pain, because they can use their torso and the length of their arms to raise my legs high toward the ceiling. No offense at all to short females, they just don’t have the ability to do the same thing in the same way.

Since 2012 there have been several male caregivers that have been part of my world. Some have worked out, some haven’t. But like all my caregivers, each has contributed something to my life, and along the way, I hope they have learned something from me as well.

A few years ago, I overheard a conversation that almost had me in tears. Jacob, who had worked with me for several months and was about to leave to start a new job, was training Joshua, who had just moved to town and was eager to learn the ropes. They were in my bedroom, and Jacob was explaining some aspects of my night routine. I was finishing up something in the kitchen and was making my way down the hallway to join them, but they didn’t know that.

Joshua: How do you respect Lorraine’s privacy and give her dignity, especially when she needs help changing clothes or getting in or out of the shower?

Jacob: Well, what I usually do is stand behind her, so she is not embarrassed when I have to see her naked or vulnerable. Then, when she specifically asks for my help, I do exactly what she needs. Then I go back to standing behind her until she needs me again.

When I heard the exchange, I had to choke back some emotion. I had not in any way encouraged Joshua to ask the question nor had I asked Jacob to talk about anything like that. These two guys wanted to make sure that I felt safe and that they respected my privacy and sense of dignity even though they were fully aware that I needed their help. It was amazing.

God bless both of them!

What is new for me these days is that I have a full team of male caregivers. I have two young men working for me now and they will be joined by a third in June as soon as he gets finished with a job shadowing gig in Italy. When I joked that I had an all-male “staff,” with one of my former caregivers on the phone last week she joked back and told me that she was going to call me periodically instead of going to Chippendale’s. Grin!

The two guys that I work with currently are great. Brandon helped me to make all kinds of signs for my book signing last week and guides me through using a step stool to get in his truck. He also took an extra-long time to learn the various stretches that we do every night because he wanted to make sure that he does them for me correctly.

Michael has spent part of his last two shifts spraying ant killer around the perimeter of my house, and carefully looking for places where they might be coming from. He also asks lots of questions when I request that he does anything because he says that “he wants to be sure to do things in the way that I want them done.”

God bless both of them!

Posted in boundaries, caregivers, Disabilitiy, how to help, Making Changes, What some people don't think about | Tagged , , | Leave a comment

It’s Not About the Tablecloths

checkered-tablecloth-2Did I order enough cookies? Are the bottles of water I bought big enough? Can we arrange the books on a table far away from the food so disaster doesn’t strike if something gets spilled? Are the tablecloths too dark? Did I get the right size napkins? Do I have enough pens? Is there someone I can borrow some clipboards from? I want to keep track of who attends my book signing so that I can tell them what is going on with me through a newsletter in the future. That way, if I have speaking gigs or more books coming out, there is a way to let people know. How cool is that?

My book signing is at the Lawrence Arts Center this coming Sunday, and I am getting a little too caught up in the details. I’m not an event planner. I don’t entertain. Neither of those has ever remotely been my thing. But I worked really hard on this book, and it is now available on Amazon. This is a way to thank everyone who supported me in the process and to celebrate the achievement of a goal that I’ve had for a long time.

It started a couple of summers ago. Once I decided I wanted to try to write a book, it took me several weeks to organize my thoughts and figure out what I wanted to say. That process was far from easy. At times I got emotional. There is something kind of frightening about putting vulnerable information out there for strangers to read. Several people suggested that I play it safe and not include such personal information. I turned that over and thought about it for awhile but ultimately decided that everything had to be included if I wanted to be authentic. And as anybody who knows me well will tell you, authenticity is majorly important to me.

I worked hard. And sometimes I wondered if it was worth it. There was more than one occasion when I had to put a draft in a drawer and leave it alone for a few weeks, just to clear my head. There were times when I wondered if anyone was going to understand what I was trying to say. Then I got some people I trust to read it and give me their feedback. That was invaluable. The rewriting began.

And there were moments when the writing was so personal that I rewrote a paragraph twelve times. And then I wrote it again. And after that, I got rid of sections of the book completely. Then I added information that I didn’t originally plan to include. And I did some more revising. And I rearranged what went where. I threw out the things that didn’t sound right. Then I revised again. I am still not convinced that this book is perfect, or even exactly what I want to say, but there came a point when I just had to let it go, or it was never going to see the light of day. I couldn’t lose sight of the fact that the purpose of this book was to get this information out to as many people as possible.

I’m in a different part of the process these days, but it is equally unfamiliar. Now I have to figure out how to let people know about this book and how to make sure college students who are going into helping professions have access to it, along with other segments of the population who just want to know more about disability issues, at least from my perspective.

But you know what? All of that is next week’s concern. Because the book signing on Sunday is about celebrating. That I got to this point. That hard work pays off. That there are people who are interested in what this book is about. And how that could potentially make a difference in terms of empowering those with disabilities in the world.

Several of my friends will be there. I heard that an email about the book signing went out to everyone in my church. One of the Lawrence City Commissioners posted the event on his public Facebook page. Lots of other friends of mine have also shared the event on Facebook, and several people who I haven’t seen in a really long time have promised me that they will come to this event.

The book signing on Sunday at the Lawrence Arts Center is about celebrating that this book is out. That I have accomplished a goal that I have had for a very long time.

It has ever been about the tablecloths.

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Just Be Aware

stigma freeToday is the beginning of Mental Health Awareness Week, and I guess the purpose of events like this is not to “celebrate” mental illness as such, but rather, as the name implies, to simply raise awareness about the subject.

I first received the diagnosis of my mental illness in my early 20’s. At the time, as well as being scared about what it might mean for my life, I was also incredibly relieved. I finally had an explanation for why my emotions were so intense. It finally made sense that my feelings of anger, sadness, and abandonment sometimes felt bigger than me. It didn’t mean I was crazy. Instead, it was just another part of my life that I had to manage. And just like the physical therapy sessions I attended consistently in order to live with my cerebral palsy, I started going to counseling to manage the symptoms of my psych diagnosis.

It’s hard for me to talk about even now, even though this diagnosis has been part of my life for decades. I don’t talk about it much, out of the fear that people won’t understand it. But I am tired of the stigma that surrounds mental illness in this country, and I know that stigma will never be broken down unless people are willing to have conversations about this subject.

It’s something I wish more people understood. That mental illness doesn’t have to be scary. And that you don’t have to have any professional experience to help me on days when I am having some symptoms. I never expect friends or caregivers to “fix” me when I am having a bad day. On the contrary. When something is upsetting me, I would rather not hear suggestions about how to make things better at that point. When I am feeling my emotions in a big way, it is difficult for me to be logical. I am not interested in how to make things better when I am in that state. And it is probably better for me to come up with my own solutions when I am ready anyway. My mental illness and all the symptoms contained in it are my responsibility to take care of. When I am having a less than stellar day, people giving me support and encouragement is what helps me more than anything. And as always, I encourage people to treat others the way they would want to be treated if they were in the same situation. When talking about mental illness, the golden rule most definitely applies.

According to the National Alliance on Mental Illness (NAMI), 1 in 5 people will experience a mental illness this year. Think about all the new moms who go through postpartum depression. Or people who have anxiety. Or people who have legitimate phobias based on some trauma they have been through. My thought is that almost everyone could be labeled with some mental health diagnosis at some point in their lives.

But therein lies the problem. I’ve never liked labels because in my experience labels encourage people to make assumptions instead of getting to know individuals. Labels have the potential to take a certain way a person’s humanity and dignity. Labels put people in boxes. And although I am aware that some of that is always going to happen in society, I am never going to be okay with people closing up a box like that and putting a bow on it. Labels and boxes are what separate society into “us” and “them.” I am always going to be of the opinion that society should inclusively be “all of us.”

My mental illness is not my favorite part of my personality, but it is there. And although I don’t have to love all of me, I do have to accept that this is part of my life and it always will be. In some ways, it has made me strong. In some ways, it has made me more compassionate. In some ways, it causes my responses to situations to be different than I wish they were. And in some ways, it has helped me to help the people I care about more effectively than I would have otherwise.

I don’t like to talk about it, even now, decades after receiving my diagnosis. I still have a fear that people will not understand.

Today is the beginning of National Mental Illness Awareness Week. People don’t have to understand. Nothing about mental illness has to be logical or make sense.

All I ask is that people be aware.

Posted in changing perspectives, Disabilitiy, Get To Know Me, negative perceptions, Psychiatric Diagnosis | Tagged , , , | Leave a comment