Life journey is not, and had never promised to be easy. At times, the journey looks, and does run smooth. But as grey hairs like us, hopefully with wisdom, will tell you, smooth rides are momentary.
The smooth ride can blink through a passage of life faster than Molepolole lighting. Yes, I’m here today, and hopefully for a while to come, to share my life’s journey. Here to rally your friends, and even foes, to points of life.
Points of discussion.
Points of ponder. And as a first rallying shot, I ponder life as it spins out of control. Out of the ordinary. Life as physically painful as it is. Just as it is!
Let’s talk of that pain.
Recently when addressing fellow scribes at an INK/PEPFAR workshop at Ave Marea, I mentioned that I am not only failing my nation Botswana, but also myself by not sharing, publicly as journalists are supposed to, about the aches and pains of living with a life condition called Rheumatoid Arthritis (RA).
Forgive me my Christian friends. I know as a Christian I should not own the disease, and say ‘my RA’. Yes, we say the power of the tongue; you call the disease, or health condition, yours and it becomes yours.
Trouble is I have the condition, and no matter how much I may wish to distance myself from it, I suffer RA. And suffer believe you me I do. This winter especially was the worst. If on the pain scale was one to 10, this winter, it was way past 10. Mxe stru!
Anyway, as I always tell those who care to listen, I don’t need sympathy when I speak, or in this case write, about this. What I am hoping to reach, or touch, is the heart of someone who knows or cares of someone who suffers RA.
This is one condition, like with many life-long or chronic diseases; the sufferer needs a caregiver. Or just a supporter!
Someone to hold you up when life goes south. With RA, at times you need someone to literally hold, host you up – from a sitting position to stand, and aid you to walk.
You see I have been blessed with a bold thunderous laugher. When you find me seated, laughing, you will never guess that rising from the chair is a delicate painful experience. It is. And in the winter it can be so painful that instead of crying I laugh. Hehehe! That’s my pain and me. We laugh, curse and laugh
So, comrades, we need support system around us, all the time. But not the judgemental and impatient ones! Excruciating pain can make us impossible. Angry. Snappy, at times quick with biting nasty words, at especially the only helper we have.
Re batho le diremaka o ka re batho ba sukiri (a subject for another day). So we need patient and understanding caregivers. The type who when we say; “hold there, no, not there, here… Eish! Can’t you see you are hurting me? Kare ntshware ha…” just nod and keep changing positions in silence.
You see our pain is excruciating. It is the type even the bearer can’t bear; at times we can’t even tell where it is. It could be on the joints but feel like it’s on the flesh, even in the marrow. You just know you are in pain.
So I am rallying you especially caregivers, be it a spouse, parent, child or even the nurse: learn and counsel yourself to know your patient. For if not, you will tire (and you do we know) and will throw in the towel.
Once you do that, your patient goes to another level, depression. And once there, it is no longer a matter of things gone pear shape, but downstream. That now is a Sbrana case. Lobatse is where we can easily go. And we don’t want to go there!
As I ponder this moment, I appeal to all – health care workers, families, work mates and even employers, to start thinking outside the box about life conditions such as RA and how best to prepare and provide support for not only patients but caregivers.
The caregiver may not feel the deep constant pain, but the emotional burden can also lead them to depths and elements of depression.
I have witnessed situations where caregivers, especially the elderly mothers passing on before their ailing spouses/partners, out of carrying the load of care giving – physically, emotionally and financially. It may be time to ponder the cost of palliative care for caregivers.
Meanwhile thank you all - family and friends who tolerate yours truly day in and out. Just don’t question my hearty laughter when I laugh at this stupid pain.
Let’s rally around the point and talk.
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