Worth the Comfort
- cubbagecamryn
- Aug 13
- 7 min read
Today marks 9 months since I received my official CML diagnosis. For many months I have been doing well, but I have had my ups and downs both physically and mentally since diagnosis. Thankfully, for the most part, I have had a positive mindset, save for the extra hard days. Recently though, I have been having a rougher go of it mentally. After 9 months of good days and bad days (which often seem endless), I have spent the last few weeks in an internal (and somewhat external–thank you to Mom and my therapist for listening) struggle about my condition. The longer I live with this disease, the more I think about how this will affect me long term. I spend lots of time ruminating on what my care looks like as I move forward.
I’ve previously mentioned the symptoms and medication side effects I regularly experience–migraines, hives, dry skin, light-headedness, nausea, pain, dizziness, etc. As I have begun to note when these symptoms tend to occur, which unfortunately is pretty random, I have begun to think of how I can best care for myself. As I have also mentioned before, I carry around a veritable pharmacy of anti-nausea meds, pain meds, allergy meds, anti-itch creams, and more. I also have masks with me, emesis bags, a migraine cap, and a ton of other stuff to help make me more comfortable in my day to day life.
I’ve been very open about this aspect of my care, but something I’ve struggled with a bit, is the idea of my mobility issues. I often experience debilitating migraines, dizziness, bone pain, and muscle pain, that make walking very hard, painful, and leave me unsteady. I have been slowly making strides (pun intended) towards finding ways to mitigate this issue, but haven’t shared much about it. Many of you have seen my puppy, Gansey, but most of you don’t know that I got him to ultimately become a mobility and stability service dog for myself. I also have applied for a handicap parking placard, and as of yesterday, ordered my first cane. Frankly, I think I have found myself ashamed of needing help in these ways. Mobility is a person’s first steps (again, pun intended–I may not be able to walk alone all the time, but on my word, CML will never take my puns from me!) towards independence. After spending time reflecting and doing research, I have come to understand that mobility aids are means of freedom and independence for those with disabilities that impede their motion.
I have really been struggling with the idea of what it means to have a disability as well. Even though I have received accommodations at work under ADA (Americans with Disabilities Act) since almost as soon as I was diagnosed, I had not thought of my issues as being a disability. Disabilities have a lot of nuance, but under ADA, I am considered disabled. This has been hard to come to terms with–not because I think being disabled is a weakness in any way–I have just felt a misplaced sense of guilt and shame, stemming from societal stigmas. I also explained to my mom a few weeks ago that it feels as if I am taking advantage of protections that are set in place for people who “actually need them.” It has taken weeks of thinking about this to realize that if I benefit from these accommodations due to my illness, then I, too, “actually need them.”
My therapist and I have also been working on this idea. This internalized idea that I am not deserving of things that make my life easier. Coming to terms with the fact that sometimes I need help is not easy. I didn't think this vulnerability would be something that bothered me, but you never know until you experience something. I have been doing a lot of internal digging to uncover what biases are holding me back from living my life with a little help in this way. I think about when I see others using any type of mobility aid. I never stop and consider whether they really need this thing or not. They have that aid and it helps them, period. I am not questioning of how much pain they are in or how much easier it is for them to get around now. I don't even think of it. Mobility aids are an extension of themselves, and help improve quality of life. So why do I place these inquiries on myself? It has become clear that these aids are helpful to me, and make life easier and more comfortable for me. Deep down, my brain is telling me I am not worth the help—that I am not worth the comfort and peace of mind that a mobility aid brings me.
In this struggle, God keeps bringing me to Matthew 6:25-34. This passage reads:
25 “Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing? 26 Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? 27 And which of you by being anxious can add a single hour to his span of life? 28 And why are you anxious about clothing? Consider the lilies of the field, how they grow: they neither toil nor spin, 29 yet I tell you, even Solomon in all his glory was not arrayed like one of these. 30 But if God so clothes the grass of the field, which today is alive and tomorrow is thrown into the oven, will he not much more clothe you, O you of little faith? 31 Therefore do not be anxious, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ 32 For the Gentiles seek after all these things, and your heavenly Father knows that you need them all. 33 But seek first the kingdom of God and his righteousness, and all these things will be added to you. 34 “Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.” (ESV)
I keep reading this passage and truly considering the birds of the sky and the lilies of the field. A friend of mine brought up how this passage is usually read for its message of not being anxious, but for me, at this time in my life, I am reading it with a lens of who I am and what I am worth to God. To God, I am worth having help to walk when I need it. I have also come to realize that even if I don't need aids all the time, when I do need them, I need them. So why not have them?
Since getting sick, I have been uncovering a lot of thoughts in my head that I didn’t even know were there. Thoughts that I don’t deserve to be well, thoughts that say I don’t deserve to live not in pain. Many things floating around in my head that I don’t really believe, but that I am subconsciously telling myself instead. It has made for a very hard few weeks, where I have had to confront these thoughts and feelings. Don’t get me wrong, I am still at peace with where God has me right now. I am not angry with my situation, but I do regularly grieve for the things I have lost and the changes I am still experiencing. My heart knows that I am held in the hands of the Creator of the universe. My heart and soul cry out for a God who knows me and values me–a God who tells me what I am worth to Him. He cares for me–He weeps for me. My head takes this knowledge and disregards it though, and I believe lies. Luckily, I am aware of it, and I am working on it. :)
I am holding this passage in my heart and mind, trying to remind myself of my worth to God. I trust Him with my care, and I want to trust Him with my feelings and thoughts, even the ones I don’t even realize are there. I am spending time in prayer, worship, and silent reflection. I am also trying to focus on the parts of my disease that are not hard for me. Things like getting to share my experience while educating and advocating, being parts of online groups where I get to uplift and encourage others with CML, and getting the push to learn more about cancer and cancer research. I am currently fundraising for the American Cancer Society, taking part in their Read Every Day in August challenge. The funds are going towards cancer research as well as supporting those who are on their cancer journeys. This is a cause that is very important to me.
If you are interested in supporting me through my journey, I ask for prayer. I ask you pray for my continued care and well-being, as well as my mental state. It is not easy having to deal with all of this, nor is it getting easier. If you would like more specifics to pray for, message me and we can talk :) prayer is always welcomed. I also ask that you would be in prayer for the others I know who are going through cancer, or are in remission–Sarah H., Sarah B., and Tim. If you are feeling inclined to donate monetarily, I would ask that you donate to my ACS fundraising page, which is linked on my Facebook, as well as below. I have also linked two poems about being sick and being in treatment that stood out to me.
My ACS fundraiser page:
(Every dollar helps!)
Poetry about living with illness:
Love you so much and praying for you friend!