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Dealing With Uncertainty
For the past couple weeks or so, I’ve had some unease that I’ve struggled to pinpoint the source of. I’ve recently read a variety of columns and comments in the forums about winter fatigue and things like seasonal affective disorder. I thought I might have this, but after researching the symptoms, I don’t think I do. I mean, the cold weather has as big an impact on me as the next SMA person, but I think the real source of my malaise has to do with uncertainty regarding my care.
My grandmother’s ability to care for me has become a bit iffy, and my friend Sam might be quitting helping with my care. I’m working on acquiring a ceiling lift and new caregiver(s), but it’s a slow, nerve racking process.
The cold, along with some family issues have compounded my unease. My two year old cousin was living here for over a month, and as much as I love the little tike, his being here changes my life and care situations.
Basically, a number of things that are out of my control are giving me some anxiety. I’m sure things will stabilize, but it’s tough now. I just want to remind everyone to try your best to accept the things you can’t change, which I know, often feels like pretty much everything. Haha.
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3 Replies
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It’s great that you can look at your situation and kind of analyze where your anxieties are coming from. It’s not an easy thing to do especially when so many things are out of our control. I definitely agree that you just have to come to terms with a lot of things, but I firmly believe that with a lot of work and persistence you can also change things you’re not happy about as well. That’s why I’m researching moving. I know it’s not something that will happen it the near future, but it’s certainly a goal I can strive for. Sometimes you can’t do it alone and more often than not it takes a long time to accomplish, but if it’s something you want it’s worth the effort. The worst graduation speech I ever heard was where this girl repeatedly said, “Just do it.” Even though I hated the speech it resonated with me.
With that being said things always pop up like the whole caregiver issue. I’ve been dealing with PCA’s for years and still have anxieties about it. Thankfully my newest PCA is working out, so fingers crossed I can have a respite from those worries for a bit. Things usually have a way of working out as long as you’re open to options.
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She must’ve had a Nike endorsement.
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I totally agree with DeAnn. Anxieties are pretty common, and it certainly helps when you can identify the source. Especially for those of us with SMA, anxieties about getting proper care for ourselves is pretty much always going to be there. Even those of us who have outside care deal with it. It’s just one of those things we have to deal with. Though I will never not recommend therapy to anyone. I strongly recommend seeing a therapist if you have anxiety and/or depression. There’s no shame in seeing a therapist.
Regarding the whole “things outside our control” mentality, it’s important to determine what we can’t control and what we can. For instance, I’ve come to terms with the fact that I have to rely on people for help with my daily needs as long as I have SMA. I’m ok with this, and I understand that I have to be willing to trust caregivers to take care of my needs, as well as friends, family, and even strangers.
On the flipside, adjusting my plan of care and acquiring more independence is something I can control. When I was in your situation my freshman year of college, I was unhappy with the fact that I was totally reliant on my parents for my caregiving needs. I didn’t want to remain in this position, so I did something about it. I talked with other SMA folks who were older than me for advice, started the process of interviewing and hiring caregivers, and I also hired some friends from college to drive me around. I refused to just sit around and wait for things to change. I took the initiative.
Have there been bumps along the road? Of course. Things don’t just change overnight. I worked my tail off, but it was well worth it. I still live at home, but I have caregivers every day of the week/weekend. Also, I pay for caregiving services that aren’t covered by the government with my own money, and I pay rent. The amount of things I rely on my parents for is pretty minimal these days.
The point I’m trying to make is that while there are things that are outside of our control, there are plenty of things that we can change. It’s a matter of putting our minds to it and taking action. I know people with SMA who are weaker than you and me, and they have college degrees, careers, and caregivers.
Here are some things that have helped me the most in terms of gaining more independence:
-Continually meeting new people and cultivating new friendships (relying on a small group of friends is very limiting; people move and you can’t rely on the same people forever)
-Education: I’m not saying you have to go to college, but I wouldn’t be where I am if I hadn’t gone. Even if you don’t go, always be willing to learn. Read every book you can.
-Get a good social worker to help manage your care plan. If you’re relying on government services and your social worker is useless, find a new one.
-Talk with other SMA people/people with disabilities in your state. Every state has different rules and regulations, and it helps to find someone in your state/area who can give you advice about living independently. I know Christine Getman and her husband live in Oregon.
-Assistive technology: You have your JACO arm. Use it to go out on your own sometime to a coffee shop or restaurant. There’s also Amazon Alexa technology, apps for people with disabilities, transportation services, etc. Use every resource at your disposal.
-Work hard. No successful person I know, whether they have SMA or not, got to be where they are through some kind of shortcut. I have a full-time job in writing/communication, but I went to a four year university and worked for the school newspaper while I was there. I also took advantage of any writing opportunity I could get, both paid and unpaid. Don’t just do the bare minimum. Go the extra mile.
My hand’s getting tired from typing, but this is the best advice I can give. Thanks for coming to my Ted Talk.
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