Old news and some new thoughts

If you're already a follower of Too Sweet Girl in Ghana, then this is old news. I was recently invited to provide an essay for A Sweet Life's online diabetes magazine. It's an opportunity to raise awareness for what our T1 children go through here in Ghana that I just couldn't dismiss.

For the most part, that essay was well received by my family, peers and cyber friends. Most who responded know how difficult type 1 diabetes is to manage under the best of circumstances, and they were very supportive of my efforts, not only to keep my daughter alive and well, but to support the local children here as well.

But not everyone agreed. I received a series of four separate emails from a local (Ghana-based) “friend” (whom I’ve actually never met but who shall remain anonymous here), who was clearly appalled. My actual responses to her emails are in red, my thoughts (i.e. what I should have said) are in blue.

Email #1

Hi Barbara,
I read your artcle about your daughter. The love that you feel for her is overhelming. But I have to admit that if my daughter got sick, the first thing I would do is leave Ghana and go home. I think you are putting your daughter's life at risk by staying here. Lol

Anonymous Friend, thanks for your support. Lol :)

I think if we were in the states we’d be in worse trouble – without insurance who the hell can afford anything over there? At least here, the most important thing –insulin – is available and cheap, comparatively. And I’m truly blessed because I do have lots of moms and dads who help me keep Alex alive and healthy.

How’s things with you? Not going to the states anytime soon are you? I need an insulin pump brought in? ;-)

Email #2

Barbara,
I sincerely disagree with you. I wa single and I could afford blue cross and blue shiled. I also knew people less fortunate than me who had help thourgh government programs. The very fact that you need something from the US tells me in my opinion that you should go home.

I also need a White Castle hamburger but I’m not rushing for the plane!

I have never met you and tjerefore I think it isn't fair for you to ask me to get you anything from the states,

Did she not see the winking eye icon?

But id I were you and my child was sick

Sick? Alex is sick?

I would get my ass home asap.

Say what you really feel, Anonymous Friend.

If your daughetr were to get malaria

been there, done that – twice!

on top pf diabtes or any type f viral infection her life could be compromised,
I think that no child from any country should be brough here to be riased

Don’t you have kids with you, here, in Ghana?

especially a sick one, Lol

Oh, that makes your bluntness (some might argue rudeness) so much easier to accept.

Email #3

Hi Barb,
Did you have Alex through ivf?

No, none of my children were conceived through IVF, but what difference does that make?

I found that part of your story intriguing.
I was in richmond vA for three years, single and not well off. But I had blue cross and blue shield.

If you live in the U.S. insurance is a necessity – you can’t get prescriptions or visit a doctor without it. Here, I can walk into any doctor’s office or pharmacy and buy what I need, with cash in hand. One thing that’s important to clarify – people with diabetes or their caregivers see their doctor very very infrequently as it relates solely to their diabetes care. The burden, the onus,, the responsibility – 99.9% of the time – is on the patient or caregiver. In a year, we probably spend all of 6 hours in total with Alexandra’s doctor. The rest of the time, I am the expert. I make the decisions. Even Alex’s doctor has readily acknowledged that she doesn’t “live” with the disease as I do and defers to my decisions as regards her diabetes care.

I think that the US is better equipped than Ghana in helping all of its citizens when they are sick.

Obviously, you don’t read the CWD forums. You don’t know how parents fight with insurance companies to get the right insulin, to get adequate glucose strips, to get an insulin pump or a CGM. You don’t know how often they have to appeal the insurance company’s ruling. You don't know that they're struggling to meet ridiculous deductibles and co-pays. Don’t have private insurance there? Then you’re screwed. You’re at the mercy of Medicare or some other state run program. Maybe you haven’t heard but insurance companies and pharmaceuticals run the country there, and their goal is to maximize profits – it certainly isn’t to ensure that every citizen has quality healthcare.

I mean that sincerly in terms of quality of life and care.

Do you really not know what’s going on over there? Or do you live in a bubble?

I think the very fcat that you need an insulin pump from home speaks volumes.

Need? We don’t need an insulin pump. I want an insulin pump –who wouldn’t want the best for their child? But in the absence of one, she’ll go back to injections. She will still live.

Also they very fact that here your daugter is exposed to mopre viral infections and malaria.

What? The U.S. doesn’t have its share of infectious disease? Hasn’t you ever heard of the flu epidemic? It seems to occur at least annually there. Alex is one of the healthiest kids I know. Aside from the occasional cold she's never been sick, never been hospitalized.

I have to say I wish you all the best and good luck,
If it were me, I would be in a plane right now on my way home.

You’re not me.

PS,

I cannot wait to go home. I have lived in eight countries and thid place is the pits.

I can’t wait to go home either, I miss my mom. But bear in mind that not every city in the U.S. is better than Accra.

Email #4

I do not mean to offend you in the least, but how can you go from rich to poor and give your kids a better life or a life with more opportunities?

I never ever said I was rich, and what makes you think that life would be better there and there’d be more opportunities? I follow current events closely because that’s my job; the economy sucks there, unemployment is near 10% and property values are in the toilet. Here, we’ve got a house (albeit under construction) that we own outright with no lien. I’m working from home doing something that I like at a wage that is acceptable to us because our overhead is low. My kids are getting a good education and lack for nearly nothing (McDonalds, Chuck-E-Cheese and Dave & Busters excepted).

My husband is Swedish, but Sweden is not a third world country.

My husband is Ghanaian, and Ghana is an emerging market.

I have friends here who have brought their kids here from other countries and for the most part they all want to go back to civilization.

I have friends from civilized countries that have lived here, left and want to come back here, in spite of everything. They miss Ghana. You’re overlooking the good here.

This place is the most backwards place I have ver been to.

Again, you are overlooking the good here. You should have seen it twenty-something years ago. Ghana has accomplished great things in the last two decades and is improving regularly albeit slowly. You really can’t compare Ghana to a developed economy; that’s an unfair comparison.

Those emails came in fairly quick succession yesterday, but I responded earlier today.

Anonymous “Friend,”

Obviously you don’t know much about the nature of diabetes so that you are reacting (over?) from a place of ignorance. A person with type 1 diabetes needs only access to insulin and the ability to check their blood glucose levels regularly. The insulin pump that my daughter uses (donated) and the new one that she will be getting (also donated) are merely delivery devices – they make life easier and provide us with the ability to closer match her food intake and her insulin.

In the absence of an insulin pump there are other delivery devices including an insulin pen or syringes, and we’ve got plenty of those. As far as my “asking” you if you were going to the states – no offense, but I ask everybody who has a tie to the U.S., you’re not special. And I am not asking that question because I’m so desperate to have the pump to save Alex’s life. No, I’m asking for someone to bring it because I don’t trust the post office. Do you?

You don’t know our circumstances, so it’s really not your place to judge me. You’ve lived elsewhere in the world. Besides the U.S., I’ve not. I know there, and I know here. And I know there is better if you have insurance, but we don’t have U.S.-based insurance. Can we get private insurance if we lived there? Maybe, but at what cost. I’m 50, my husband is 59 and besides our other two we have one child with a chronic, very expensive disease. If we could get insurance it will cost nearly $2,000 a month. A month! You can buy an awful lot of medical services here in Ghana for that, and not necessarily at Korle-Bu.

We have Ghana-based insurance that lets us use medical services at 37 or Korle Bu plus some local clinics, that’s fine. If Alex falls very sick – and in three years, she’s the healthiest of all my kids! – we’ll go to Korle-Bu because I trust her doctor to do well by her. She’s already had malaria a couple of times, and coped just fine. Interestingly, I know when Alex is getting sick long before she exhibits symptoms because of her blood sugar.

As far as her diabetes care, it’s not rocket science, its just monotonous vigilance and it’s my job.

If Alex had a disease that couldn’t be well managed here then I’d find a way to get her out of here, insurance be damned. But for all intents and purposes, aside from having a chronic disease, she’s a healthy, thriving little girl.

Yes, Ghana is a backwards place. But it is my husband’s country and he is who he is largely because of being raised here. I won’t disparage it for its problems; only try to make it better. This country is my children’s legacy, such as it is, but I’m not ashamed that I live here. Granted, some days I want to tear my hair out and scream, but I’ve been coming back and forth to Ghana for more than 2 decades, and I remember how bad it was and know how far Ghana has come.

Returning to the U.S. now is not in our cards. We have family there, yes, all of whom have their own lives, their own problems, we visit when we can afford it. Our home is here, our lives are here. We’re not diplomats or expat employees of some international conglomerate. We’re “retirees” in effect, making do with pension, consultant and freelance revenues.

And here is where we’ll stay. I know you mean well, and you’re entitled to your opinion, but unless you walk in my shoes, don’t judge.

P.S. I can’t wait to go “home” (for vacation), either. As soon as I get $6,000 together.