When was the last time you thought about how much time it takes you to do a simple task? Like putting a Cheeto in your mouth? Or putting your clothes on for the day? Most people don’t even think about how long it takes them complete routine simple tasks. Simple tasks that humans do every day become second nature. It’s often only thought about when these routine tasks take longer to complete for whatever reason. When something takes longer to do than normal, frustration often sets in. For some people with disabilities, basic tasks often take longer to complete. It can vary day to day which creates more frustration. As I’ve said before, learning patience is a must when living with certain disabilities or health conditions.

Cerebral Palsy is considered non-degenerative which means that the actual condition does not get worse over time. As I’ve explained in previous entries, though, many people have found that secondary effects of the condition often appear as people age. Many of my friends with CP have found this to be true. The most frustrating thing is that none of us were expecting these issues. As kids, our parents weren’t told to expect more problems as we age.

I recently had another emergency gastrointestinal surgery. I’m fortunate to be able to know what’s happening and that I need to go to the emergency room. This was the fourth time it has happened in less than nine years. I spent a week in the hospital recovering and then another week or so at my parents. Fortunately, my parents were able to stay with me at the hospital to help with communication and cares. By now, we know the recovery routine pretty well.

However, this time has been a little different. My body hasn’t bounced back like it has in the past. While thankfully, the actual stomach issue has been resolved, my body is sort of playing games with me. My muscle spasticity has been way worse since the surgery. When my spasticity is really bad, my body freezes. I literally can’t move until the spasm passes, and this happens several times a day. We have no idea why suddenly it has increased. When it happens, it’s not only painful, but it’s also very frustrating. I have no idea when it’s going to happen. It has happened several times during meetings on Zoom. I just have to turn off my camera and do the best I can to continue to participate in the meeting. Thankfully, people who I work with are understanding and patient with me, but it’s incredibly frustrating.  

Due to this new issue, things also take me even longer to complete than before. I feed myself lunch everyday and I’ve noticed that it takes me much longer to eat than it once did. Same with typing--it’s taking me longer to accomplish things on the computer. My caregivers have noticed it too when they’re helping me with cares. When my muscles tense up, we have to stop what we’re doing and just wait. Fortunately, they’re all pretty patient and are good at taking the time I need.

I learned I need to have patience at an early age, but, admittedly, this has taken a toll on me mentally. Why is this happening to me? Will I ever catch a break? Is this my new normal? Questions such as these go through my head quite often lately. My poor mom gets the brunt of my frustration. We are working with doctors to try to figure out something that will help, but the truth is, there really isn’t a “cure all” for this. Unfortunately, it’s part of my condition and there are still many unknowns. At my post-op appointment, we questioned my surgeon about what could be done to prevent gastrointestinal issues from happening again. She told us that there is really nothing that can be done to prevent it. It’s just how my body is. She said that I have a “weird anatomy”,” and that there’s no way of knowing if/when it’ll happen again. Hearing that was discouraging. I told my mom, “I’ll probably end up dying from one of these gastrointestinal issues.” She didn’t know how to respond to that. She reminded me that it’s good that I’m able to tell when something is wrong and communicate that I need to go in. My surgeon emphasized that as well. Still, it’s a hard pill to swallow when your body is slowly declining at the age of 35, and there’s nothing you can do about it.

Let me be clear-- by no means am I looking for pity. I only share this to educate people. Obviously, I don’t hope anyone else is going through similar circumstances, but the reality is that people are. I want them to know that they’re not alone. May is Mental Health Awareness Month. It’s no secret that I’ve been in several “funks” from time to time. There are several different ways to deal with depression and anxiety. Some people see a therapist on a regular basis. Others take medication. Other people need in-patient treatment. There are several different options to help people deal with this. Personally, I use a combination of things. My mom is my sounding board. She is able to usually talk with me and get my mind in a better place. Sometimes, I talk with friends who I know have dealt with similar issues. Getting out and doing something social usually helps me a lot. I’m disclosing this in hopes of ending the stigma—several months ago, I talked to my doctor and started on a medication to kind of help me with anxiety and depression. I’m not proud to tell people that, but it’s life. I think it’s important to know that others need a little help. I finally got the courage to talk to my doctor after I talked with two of my friends who have similar issues. For me, the medication certainly doesn’t mask any of the thoughts or feelings I have, but I didn’t want it to. It does, however, seem to keep my mind a little bit calmer.

Mental Health is part of our overall well-being. Sometimes, life can be hard and unfair. We all have feelings of sadness and frustration sometimes. What’s important is how we deal with it. For me, when I’m having a rough time, my mom says, “remember, you’re doing the best you can.”  She’s right. I really encourage people who are having a hard time in any way to reach out to someone who can be trusted. It could be a neighbor, a friend, a coworker, a doctor… whoever that may be, share your feelings with them. It’s ok to ask for help.

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.