Social worker today suggested ‘therapy’ to help Noah and I deal with the difficultie s of having a chronic illness. I snappily smiled, “we don’t need therapy. We need the an swer, then we’ll be fine.”


I know these people mean well. I get it. That’s their job. The professional shoulder to cry on. The person we’re supposed to complain and moan about how difficult our lives are and how hard it is to make it through the day.

The problems I have with this strategy?

1) it doesn’t fix anything. I can waste time crying all I want to, and my immune deficiency is still going to be there when I’ve dried my eyes and thrown out all the tissues — then I’d have to deal with that fact I just wasted whatever valuable energy I did have that day just spinning in circles and crying about something that isn’t just going to go away just because I wished it too. It’s a waste of time feeling sorry for myself.

Then more importantly,

2) when you actually do have a serious immune deficiency — a real one, not an imaginary one — an immune deficiency that **kicks you in the ass** immune deficiency —

that also means I’ve spent a good portion of my life in hospitals, which means I’ve met many people who have it much worse than I do. They’re either sicker than I am, or they don’t have a Godfather in their life to make sure they have a home and access to health care, like Noah and I have been extremely lucky to have.

So as much as my life sucks — and yes, as the mountain of medical supplies in my bedroom can attest to— my life does suck,

but I’m very much aware of how much worse life can be, so most of my time…I actually feel grateful.

So why waste time moaning about it? This isn’t a recent major car accident or the sudden onset of a destructive illness. This is an immune deficiency that has been an ***entire way of living life for years and years***

Normal people don’t get that. Maybe because they think about how sad they would be if they got really sick? How destructive it would be to their life as they know it? How developing a serious illness would keep them from their dreams, so they would feel so sad?

But when living life like this has been **all you’ve known for a very long time**

you get well past thinking about what you don’t have, and focus more on what you’re grateful for — to be alive — to have access to medical care — to be able to go to the pharmacy and have the money to pay for medications that keep us alive —

Everything else feels so trivial and superficial in comparison, so why would I be depressed about that? That’s great for the normal people to care about such things,

But we, the seriously ill, have much more serious hopes and dreams and therefore are not sad or depressed by the lack of trivial and superficial wants and desires of the normal people.

I want this immune deficiency fixed and solved so that my son David Noah can actually develop and nurture have those types of normal dreams and desires.

I mean it. Don’t pity me, don’t feel sorry for me, amongst the seriously ill I am one of **the lucky ones**. Grampa Joe is an angel in our life most do not have.

Therefore, I’m not sad or depressed, I’m 🤪*fierce* and *determined* to get the answer. Don’t confuse the two.

It would be insulting to the gods if I didn’t use the luck of my situation not do **everything** I can to try and solve this for my son.

So get on it. Fix it. Trust me, I’m not sabotaging my life or engaging in destructive patterns of behavior for fun.

We’re sick. Help us.

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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