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Living in “SMA Limbo”
“What no one discusses is the significant emotional labor required to survive with SMA. You don’t just get through a crisis and move on. You repeat it over and over in your head. You dissect every second, wondering what could’ve gone differently. You memorize the details, try to prevent it from happening again, even when you know you can’t. You brace for the next emergency before your body has even recovered from the last.”
The above is an excerpt from one of our patient columnists, Jasmine Ramos. I had wanted my last forum post of Disability Pride Month to provoke conversation about something we have all gone through, and this section of her column spoke to me. Because in many ways, I still have not left my six-month stint from the hospital; it’s why I keep talking about it. I am still waiting for the other shoe to drop, still putting off big things I want to do, in fear that I will wake up in the neurology ward the next day. I’ve dubbed the experience “SMA Limbo.”
Maybe, though, by sharing and assuring each other we’re not alone in this experience, we can all start letting go a little. What is “SMA Limbo” like for you? Are you still in it?
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15 Replies
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If you’re interested, you can check out these columns:
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There is a psychological term for this negative thought process: rumination. Yes, those of us living with SMA need to take precautions that others don’t. That said, I refuse to let SMA define me or control me. There is too much joy available in life to let fear control you, whether that fear is actual or manufactured. If real, take appropriate steps to mitigate it. If manufactured, take steps to correct and move past it.
Dwelling on negative experiences reinforces them and gives them more strength and control over you and your overall mental health. I’d encourage you to find alternatives thought processes, with or without help. Best wishes.
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I’ve definitely felt this way plenty of times before. I don’t think it’s at all overly negative to recognize the hardships that come with living with SMA. Validating your feelings is important, and it’s OK to vent and reflect. There are certainly days that are better than others, and I think living with SMA is very nonlinear. But it’s totally valid to express when you’re feeling down or like you’re in limbo. It’s just reality.
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Hey Kevin –
I have a genuine appreciation for the need to deal with reality of the hardships of those living with SMA and other NMDs. What’s not healthy IMO is letting the fear of the possible negative outcomes become all-consuming and eliminating the possibility of experiencing joy in our lives. The way the issue was presented is allowing it to consume and overwhelm (” You repeat it over and over in your head. You dissect every second,..”). As I mentioned above, we do indeed need to take precautions that those unaffected don’t need to consider, and I’d always want folks to take steps to be and feel safe. When the negativity, at certain levels 100% understandable and appropriate, takes over your ability to experience and enjoy life, that’s a problem.
I would encourage us here to try to focus more on the possible given the reality of our limitations, not just the negative. Lately, there’s more of a negative tilt here.
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There’s a weird paradox I’ve discovered in my emotional life. When I’m feeling overwhelmed by negative emotions and thoughts, they only get stronger if I try to run away from them. If I just keep telling myself to stop worrying, my worry intensifies. On the other hand, if I make space for those emotions, if I validate myself, reassure myself that my feelings make sense and it’s okay to not be okay – then those feelings become smaller and less overwhelming.
This is also true of my interactions with other people. If a friend says, “You need to move on and focus on the positive,” then I get defensive and my negative thoughts get louder. But if a friend says, “It makes so much sense that you’re feeling that way” or “You’re not crazy, I’ve had a similar experience,” then I calm down and feel comforted because I’m not alone.
So while I understand your goal, Mike, I think the best way to accomplish that goal is to talk exactly the way Kevin’s talking – building a sense of community by affirming our shared experiences.
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Thanks Micaela! Valuable and appreciated perspective. I will only say that if that works for you, I’m thankful you’ve found an effective solution for processing negative emotions and thoughts. That said, that approach may not work for everyone. If my solution doesn’t work for you, it doesn’t make it any less valid for me and perhaps others. I’m possibly reacting to what I perceive as an overall negative direction that we seem to be going in here. That doesn’t mean I’m dismissive of those experiences, yours, mine or anyone else’s.
And I apologize if I implied that we shouldn’t be “building a sense of community”. We absolutely should be doing that (and I believe we are) and sharing our experiences, good and bad. I could not agree more. That said, too often here lately we seem to be skewed more toward the negative IMO. I acknowledge our experiences and our challenges, and believe those make us stronger, as does a sense of community. That doesn’t mean ignore them or pretend they don’t exist because they absolutely do. I just think some of those shared experiences can and should be more positive in nature. That is in no way denying that the challenges and negative experiences exist, but there is not a one size fits all solution.
Admittedly, some of this may come with an evolving perspective with dealing with this condition, the good and the bad, for almost 50 years. Dwelling or placing too heavy (again, IMO) of a focus on the negative simply doesn’t work for me. Some people in our community choose to let SMA define them. That’s valid for them, but that doesn’t work for me either.
Again, I appreciate your thoughts, feedback, and willingness to share your perspective.
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And sorry, I interpreted the first comment/post as almost or possibly being paralyzed by fear of something negative. Perhaps my interpretation wasn’t correct. When I was able to walk, if I fell, I got back up. Sure, I was worried about falling and as walking became more difficult for me, I had to accept that some situations would be too difficult for me to navigate. That’s being aware of the challenges, some of them potentially too much or unsafe. But I didn’t let those concerns prevent me from embracing and enjoying as much as I could. I still find ways to experience as much joy as possible.
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Thanks Mike! I have a lot of thoughts, so apologies for how long this is.
I’d like to add that my approach isn’t just something that works for me. It’s an approach that was recommended by my therapist, who I was seeing specifically because I felt overwhelmed by negative thoughts and circumstances in my life. This approach is also evidence-based: “research in the field of emotion regulation suggests that when individuals are given space to experience their emotions without pressure to “move on” or “get over it,” they are more likely to engage in healthier coping mechanisms and recover more fully over time.” (https://www.psychologytoday.com/us/blog/the-weight-ing-game/202502/is-there-a-right-way-to-hold-space-for-someone-in-crisis)
To be honest, I don’t feel like I really understand what you’re suggesting as an alternative approach. I’m curious whether you’ve ever gone through the experience of feeling overwhelmed by negative thoughts and emotions that you couldn’t control or just move on from. What approaches worked for you in that context?
I think this is such a tricky situation to navigate because SMA is inherently a negative experience. Is it possible to appreciate the good things and joys in my life despite SMA? Absolutely! Can I recognize that SMA has shaped my character and life experiences in ways that I can find value in? Yes! But that doesn’t change the fact that most of our experiences related to SMA are deeply traumatic. The original quote that started this discussion was from an article where Jasmine describes a near-death experience. While every day with SMA is not that dramatic, for many of us every day is exhausting. Whether we’re unable to breathe, having conflict with a caregiver, navigating labyrinthine benefit bureaucracies, or facing inaccessibility, we have to deal with so much crap in our lives. I assume I’m not the only one who comes to this forum specifically because it is the only place where I can bear witness to my grief and everyone here knows exactly what I’m talking about. This forum will inevitably skew negative because it’s about SMA. I don’t think that’s a problem – as Sherry said, “by sharing and assuring each other we’re not alone in this experience, we can all start letting go a little.”
One final comment – I am quite sure you don’t mean to be dismissive of anyone’s experience, but some of your phrasing does unintentionally sound dismissive. You use the word “let” a lot – “I refuse to let SMA define me or control me. There is too much joy available in life to let fear control you,” for example. This wording communicates that someone like Jasmine is at fault for letting themselves be overwhelmed by negativity rather than choosing joy. It communicates that you don’t understand what it’s like to be unable to choose joy. Telling someone who has been through trauma, “I don’t let fear control me, I choose joy,” is like telling someone with SMA, “I don’t let muscle weakness control me, I choose walking.” I don’t think that’s what you mean to say, but that’s the message that’s coming across.
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Hey Micaela – no need for an apology for the lengthy reply as this is a valuable and appreciated perspective.
So, a lot to digest. I thought I previously mentioned I may have misinterpreted the initial post incorrectly and I admittedly did not read the referenced post by Jasmine. I was never focusing on the cause of the fear, but just how Sherry presented it.
I never – never – stated to “get over it” or “move on”. I haven’t re-read my comments, but I certainly hope I never said that. My concern is that the implication was being paralyzed by so much fear that it comes across – to me – as unhealthy. That’s a general statement I’m making on fear controlling and overwhelming, in my opinion, and then not being able to get to a better place at some point in time – I’m not defining what that time should be. That is not, or at least was not, intended to suggest to not process or deal with the traumatic experience or to pretend it never occurred (“move on” or “get over it”) or not providing the space to deal with or experience their emotions. If it came across that way, I apologize. By all means, if that is someone’s experience and they’re overwhelmed, like you did by working with your therapist, you found a way to work through that, for the given situation and potentially others in the future. So, I never said that was only a solution for you, but thankful you found something that helps you when feeling this way. And that obviously works for others. That’s not the only thing that works and certainly you would agree, I believe, that that solution may – may – not work for everyone.
There is no need to be confused about my suggested alternative approach. I’m NOT suggesting an alternative approach. Again, and always, this is and never has been “do it my way” or a one size fits all suggestion or alternative approach.
With SMA, there are certainly some things beyond our control – and some of those may and actually are negative or traumatic experiences. That said, having a space to share them is fine. But that doesn’t change my impression, which I’m hopefully allowed to have even if not aligned with yours or most here, that we are trending in a more negative direction lately. That’s an observation and I’m okay with it if you frame it or view it differently.
By using “let”, I’m focusing only on me. Not anyone else, so again, apologies if the way I phrased it implied that I was placing blame or fault. Tone is difficult to interpret in written words, but this definitely not my intention, so appreciate you pointing that out and agree I could have worded that better. Your counter example, hopefully an intentional exaggeration, suggests ignoring reality, which I’m not suggesting or encouraging. Ultimately, I’m only suggesting taking steps, whatever those steps may be and with or without professional help, so we’re not staying in a constant state of overwhelmed feelings, as I don’t believe that’s healthy. That doesn’t mean it’s not real. And it doesn’t mean folks don’t have to work through that differently. It also doesn’t mean that everyone deals with it exactly the same way. I don’t feel like airing my traumatic experiences here, but have had my share of them. That I deal with them differently doesn’t make either one right or wrong, just different. If I implied otherwise, not my intention and again, I apologize.
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I finally had a chance to re-read my previous comments. Regarding “move on”, is it possible that you’re interpreting that from this comment: “If real, take appropriate steps to mitigate it. If manufactured, take steps to correct and move past it.” That specifically referenced manufactured (not actual fear), and I suggested taking steps to correct the thought process with this type of fear. Taking steps to “mitigate” actual fear, which I also suggested, does nothing more than encourage to do what you suggested worked for you, Micaela. I would never intend to marginalize someone’s experiences, but extracting one or two words and forgetting the others that provide context is unhelpful. I will maintain my opinion that there are concerns with staying in a perpetual state of fear (Google it if you don’t believe me). Encouraging dealing with negative and traumatic experiences and sharing them if choosing to do so, while at the same time wanting to see more (not only, just more) articles with a positive tilt is another opinion or preference. Kind of done with this.
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SMA Limbo. What a great way to describe all the variables included in this condition. How many gene copies do you have? When did you present? What kind of treatment or therapy have you engaged with? How old are you? What are your coping skills? Are there other mental health issues impacting your emotional well being?
(And for fun, let’s add how many times have you had COVID? Yes, sarcasm is alive and well)
Clearly this is a very complex topic and each of us have unique experiences, including our strategies for handling them.
While I try not to dissect every second of a crisis, the “emotional labor” is sorely underrated. Stable plateaus become shorter while the drops in my baseline happen more frequently. Renegotiating with my body repeatedly to figure out what I can and can’t do is exhausting.
Feeding myself. Nope.
Applying my make up. Nope.
Holding a book, turning the pages. Nope.
The reality for me has been an ever-changing dance between acceptance and gratitude, making space to grieve, be pissed off and always returning to the humor in life. How much focus on the negative is too much? When does reflection become rumination? That measure will be different for each of us. There is value in speaking truth and we often feel our families carry too much of this burden.
That said, if there’s a “negative tilt,” how do we counter it without silencing an important pressure release valve?
@mike-huddleston, be the change you want to see in the world. What kind of content would you like to see more of here?
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Thanks Susana – I’m in no way trying to silence anyone or limit their “pressure release valve” options, as those are valuable and important. I’m not referencing patients here as so many people have expressed considerably thoughtful comments and replies and I’ve appreciated and learned from many of them. Sorry if that sounded like my intent.
However, I’m referring to some of the topics selected by some of the staff writers and the angle taken in some of those articles. We’re a burden to others, life is hard, how difficult is your experience with x, y, or z. Just loose examples, I realize, but I don’t want this to turn into an attack. Considering I’m neither one of the writers nor an editor here, that’s not my lane to “be the change I want” here at this site. It’s an observation based on months and months, perhaps even years, of articles, not just one. I suppose I could have posted this every time I felt that way, but decided to do it just here. The people who work and write for SMA News Today control the content, not me. Too often lately it seems to me – simply meaning my opinion, impression, or perception – that there seems to be more of a negative tilt. That doesn’t mean exclusively or only, just exactly what I said, “more”. It’s okay if you or others don’t share that view and I respect that. But that doesn’t make my opinion, impression, or perception any less relevant to me. All that said, I also don’t like having what I’ve expressed as my opinion taken out of context and dissected word by word so the meaning is lost, in what comes across as an attempt to stifle my different opinion.
I’m 62, and have been and continue to be an advocate for the SMA community and the disability community in general. Before I retired, I ran an ERG for employees with disabilities for a company with over 42,000 employees nationally. I volunteer at 5 different organizations, including serving on the board of directors for one of them, all within our community and am a local MDA ambassador (see my guest blog in the latest Quest for a sample, if you want). I’m the youngest of 5, with my next two older brothers also diagnosed with SMA. I lost one (a type 2) of them in 2004, and the other one (also a type 3 like me) on July 18th. I know the difficulties of SMA. I know the trauma of living a life with a disability. Because I choose a different way to look at life and deal with the difficulties and trauma doesn’t mean my view is “less”; just like other’s way of viewing life is “less” in my opinion. We choose to look at life and perhaps the world differently.
Bottom line is if the people who write and edit here and make those topic decisions continue down that more negatively leaning path (again, my opinion), I’ll just read less and less. Obviously at my age and with my life experience and dealing with the effects of SMA for almost 50 years, my perspective will be different than others, and that’s okay – and exactly how it should be.
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Hey Mike! Apart from briefly going through comments and posting topics here, I unfortunately haven’t been able to engage as much as I would have liked to recently. Life happened, etc. etc.
I have a quick moment before bed now, though, so I’d like to lend some of my thoughts, if that’s okay? Firstly, I will briefly say I didn’t intend for the original post to feel overly negative. I meant to highlight this feeling many patients have had — especially after a health scare or hospital admission — of a very particular type of anxiety that something terrible will happen again. Before my six-month hospital stay, I was working multiple jobs, taking a writing class, expanding my social life, receiving career-changing offers. Then the chronic pain got worse. Then I had complications. Whenever I got out, I didn’t know if I’d stay out. I was also far too underweight to have any stamina whatsoever. Everything I had got halted or destroyed. So, starting my life up again felt irresponsible until I could feel the ground under my feet again. I didn’t want to leave more things undone and more people in the lurch. That’s the feeling I (and I believe, Jasmine) were trying to convey. As Susana said, it’s a constant negotiation with our bodies. I was just with my pain specialist today so I could ensure my projects right now get done!
That aside, I’d like to say you, as a reader and community member, can absolutely tell us what you’d like to see more of. Yes, it’s ultimately the writers and staff who dictate content, but we do so based on what we think our community’s needs are. I think that’s why you’ve seen a “negative tilt” lately — the world seems so mean and unfair and terrifying right now, we want our readers to know they’re not the only ones trying their best to stay afloat and losing their grip every now and then. But we want to celebrate joys with you all too. Of course we do. It’s just a tricky balance, figuring out how to do that without coming off like we aren’t seeing and feeling the horrors.
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Thanks for your reply, Sherry. As I’ve mentioned in several responses, my intention was never to discourage people from expressing or sharing their very valid concerns and issues. This can – and should – be a safe place. I’ve also admitted that as someone who has dealt with SMA for nearly 50 years and who has lost two older SMA diagnosed siblings, my life experiences are potentially vastly different, as is my perspective. That’s not to ever diminish anyone else’s in any way, just to say we’re Venn Diagrams, with some shared/similar/overlapping experiences, and some specifically unique. Feeling connected and understood are important to our development as a community. My response was based solely on my observation of what seems to be a more negative tilt lately. That’s it. You seem to recognize that as the case based on “community needs”.
Based on my age and experiences that are unique to me (not the shared ones), I won’t feel like a victim due to SMA, I won’t be defined only by SMA (we are complex beings and much more than that). I recognize and respect that others may – and likely – have a different take. And that’s perfectly okay as neither way is necessarily right or wrong, but both are absolutely valid. I wrote a lot in several responses and have had one word singled out and focused on as offensive. That’s unhelpful and it seems other comments may have been taken out of context. That’s incumbent upon me to be more careful with my comments. I’ve apologized if I didn’t make my intentions clear umpteen times and frankly, won’t do that again as by now it certainly rings hollow, so what’s the point? My intentions are viewed as an attempt to suppress and NOT provide a safe space when nothing could be further from the truth.
As far as this place, if a more (not only!!!) negative tilt is what you collectively as writers and editors feel is what is needed most by the community here, by all means, have at it. Even if it’s not my personal preference, I realize beyond any doubt that it serves a necessary and valid purpose. When I was an ambassador for BioGen, one of the main points of my story was to make sure to emphasize how important it is to not feel isolated or alone. So, obviously I would NEVER want community members here to feel isolated; sharing those extremely difficult and traumatic experiences here is vitally important. I maintain that opinion today yet also feel there is value gained when we recognize the positives and see examples of the possible a bit more frequently. Both things can be – and are – true at the same time.
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Thanks for sharing, Mike. I appreciate your perspective. And thank you, everyone here! The more we can learn from each other and support each other, the better.
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